In 2004, Medicaid HCBS waiver expenditures totaled $20.5 billion, with about 74 percent ($15.2 billion) devoted to supporting community-based care for individuals with developmental disabilities. About 40 percent (415,053) of individuals served through such waivers had developmental disabilities. Expenditures per person on this population are higher than for other groups served through the waivers, such as the elderly, because developmentally disabled individuals often require supportive care on a 24-hour basis. In 2004, annual Medicaid HCBS waiver expenditures per person served were $36,697 on average for individuals with developmental disabilities compared with $6,266 on average for elderly individuals. Fifty states had 1915(c) waiver programs for individuals with developmental disabilities in 2006. Waiver services vary by state but include services intended to help individuals live as independently as possible in the community. To be eligible for Medicaid HCBS waiver services, including services for individuals with developmental disabilities, individuals must meet the state’s criteria for needing the level of care provided in an institution, such as an ICF/MR, and be able to receive care in the community at a cost generally not exceeding the cost of institutional care. As described in CMS’s guidance for HCBS waivers, a developmental disability is defined as a severe, chronic disability, attributable to mental or physical impairments, with onset before age 22. Individuals with developmental disabilities are limited in their ability to carry out several major life activities, including self-care and mobility. To receive federal funds for Medicaid HCBS waiver services, states must satisfactorily provide the statutory assurances for the 1915(c) waiver program that include having necessary safeguards to protect the health and welfare of beneficiaries. CMS requires that states submit waiver applications that identify and describe how they will provide each of the statutory assurances. On the waiver application, CMS expects as part of the health and welfare assurance that states specify (1) which critical incidents states require to be reported to developmental disabilities agencies and appropriate authorities for review and (2) the follow-up actions required if the state identifies a situation in which a beneficiary was not being safeguarded. CMS guidance for waiver applications instructs that incidents of abuse, neglect, and exploitation, at a minimum, be reported and reviewed; states may define other events as critical, as well. For example, CMS identifies death as an event that states may include as a critical incident. When reviewing HCBS waiver applications, CMS determines whether states meet program expectations, such as including the entity responsible for managing critical incidents to demonstrate necessary safeguards are in place. Initial waiver applications, if approved, are approved for a 3-year period, and subsequent applications are approved for an additional 5-year period, unless CMS determines that the assurances provided during the preceding term have not been met. In a 2003 report, we examined the adequacy of CMS’s oversight of state Medicaid waiver programs and recommended that the Administrator of CMS develop and provide states with more detailed criteria regarding the necessary components of an HCBS waiver quality assurance system. In response to our recommendation, CMS added an expectation to its Medicaid HCBS waiver program for states to improve the quality of waiver services and has implemented this new expectation in the form of an additional section on the HCBS waiver application. CMS defines quality improvement as the process of collecting information about Medicaid HCBS waiver programs to identify and correct concerns and to identify areas for improving the care provided to waiver beneficiaries. States can use information gathered from their critical incident reviews to determine whether strategies are needed to improve the quality of care. States applying for new waivers or waiver renewals after May 2005 were asked to submit a detailed description of their quality improvement strategies. For example, CMS guidance directs states to describe processes used to measure the performance of their waiver programs and to develop initiatives for quality improvement. CMS is encouraging and helping states to develop quality improvement strategies. As of October 2007, CMS had provided technical assistance to more than 40 states and more than 140 waiver programs that requested assistance in developing and implementing their quality improvement strategies for the Medicaid HCBS waiver programs. In addition, a provision of the Deficit Reduction Act of 2005 requires the Agency for Healthcare Research and Quality to develop HCBS quality-of-care measures, which CMS may incorporate into its waiver program if the measures reinforce the agency’s expectations for states regarding quality improvement. When a state receives a Medicaid HCBS waiver, the state’s Medicaid agency is accountable to CMS for compliance with waiver program expectations. State Medicaid agencies may delegate administrative and operational responsibility for waiver programs to the department or agency with jurisdiction over the specific population served or services provided. For waivers serving individuals with developmental disabilities, operational responsibility is often delegated to the state developmental disabilities agency. State developmental disabilities agencies may then contract with local providers, networks, or agencies to provide or arrange for beneficiary services. Some states use state employees to provide waiver services to individuals with developmental disabilities, such as case management services that include individual assessments and monitoring of care. State protection and advocacy agencies may be involved with state developmental disabilities agencies in the review of critical incidents among individuals with developmental disabilities where there is suspicion of abuse or neglect. The Developmental Disabilities Assistance and Bill of Rights Act of 1975 established the protection and advocacy system to protect the legal and human rights of people with developmental disabilities. In order to receive federal protection and advocacy funding, states must have a protection and advocacy agency, independent of any service provider. Given that abuse and neglect among individuals with developmental disabilities might not always be evident, protection and advocacy agencies play an important role in monitoring services provided to such individuals. The Developmental Disabilities Assistance and Bill of Rights Act, as amended, authorizes funding for protection and advocacy agencies to (1) investigate allegations of abuse or neglect when reported; (2) investigate suspected abuse or neglect when there is probable cause that incidents occurred; (3) pursue legal, administrative, and other appropriate remedies on behalf of individuals with developmental disabilities; and (4) provide information on developmental disability programs to the public, among other things. As a condition of funding, the act requires protection and advocacy agencies to have access to individuals with developmental disabilities and to their records, including reports prepared by agencies or staff on injuries or deaths. The act also requires, as a condition of funding, that states provide information—to the extent it is available—on the adequacy of HCBS waiver services to their protection and advocacy agencies. All 14 states whose officials we interviewed included death among individuals with developmental disabilities as a critical incident in their waiver programs. Officials in these states told us that the developmental disabilities agency required waiver services providers to report to the agency deaths of individuals with developmental disabilities. Consistent with CMS’s expectation that states review critical incidents, the developmental disabilities agencies in 13 of the 14 states we interviewed had processes in place to review deaths. We do not know if states other than these 14 define, report, and review deaths as critical incidents. Because most states have laws that require reporting to coroners or medical examiners when the cause of a death is unknown or unnatural, it is likely that at least some deaths of individuals with developmental disabilities in the remaining 36 states are investigated. However, we did not review the extent to which information about such investigations is shared with the developmental disabilities agencies. All but 1 of the 14 states whose officials we interviewed included most of the six basic mortality review components experts identified as important when reviewing deaths among individuals with developmental disabilities; however, states varied somewhat in how they implemented these components. For example, some states’ officials said they reviewed unexpected deaths only, whereas others reviewed deaths of all developmentally disabled individuals receiving state-funded services. Screening and reviews in most states were typically conducted at a local level, such as a county or region, and review findings led to local actions, such as tailored training with individual providers, to address quality of care. Officials in most of the 14 states in which we conducted interviews reported that they aggregated mortality information. Officials in several of the 14 states in which we conducted interviews told us they believed mortality reviews reduced the risk of death and improved the quality of services provided; however, these states had not documented the impact of reviews on mortality. We identified and defined six basic components for state mortality reviews, based on interviews with five developmental disabilities experts and documents they authored (see table 1). The five experts believed that these components were important when reviewing deaths among individuals with developmental disabilities. Our literature review added support to the identification of these components for mortality reviews. First, standard information is collected about the individual’s death, and this information is screened by developmental disabilities agency staff to determine if further review of the death is needed (component 1). If it is determined that a mortality review is warranted—for example, if the death was unexpected or the screening suggests a possible quality-of-care concern—officials may conduct a more in-depth review to evaluate the cause and circumstances of the death and the individual’s medical condition (component 2). Mortality reviews include medical professionals (component 3). The mortality review process is documented (component 4) and may result in recommendations that address any quality-of-care concerns identified (component 5). Mortality data for deaths among individuals with developmental disabilities are aggregated to identify trends over time (component 6). For example, aggregated data can indicate patterns by cause of death, age, services received, or other programmatic factors. Figure 1 illustrates how a state incorporated the six components in an actual mortality review involving a 44-year-old woman with developmental disabilities. The woman died of pancreatitis while living in a community group home and receiving Medicaid HCBS waiver services. All but 1 of the 14 states whose officials we interviewed included most of the basic mortality review components identified by experts as important when reviewing deaths, but some variation existed (see table 2). The one state that did not include most of these components was Texas. While developmental disabilities agency officials in Texas told us that state-level officials screened some standard information about deaths, they said the agency did not have a systematic process for reviewing deaths to identify and address quality-of-care issues. Instead, information was referred to investigative authorities, such as adult protective services, if the screening process revealed the death was suspicious. Texas state officials also told us that they did not currently aggregate mortality data. However, there was variation among the states in how they implemented the six components. Officials in some states in which we conducted interviews told us they reviewed only deaths determined to be unexpected or suspicious, but in other states all deaths among individuals receiving agency services were reviewed. Some states also used criteria other than the cause of death to determine whether a case warranted further review. In Washington, for example, all suspicious deaths in community settings were reviewed regardless of cause of death, but unanticipated deaths were reviewed on a case-by-case basis, depending on the outcome of a local- level screening process. In Massachusetts, officials routinely reviewed the deaths of all individuals, including those residing in a private home, if they had been receiving more than 15 hours of agency-funded community support services. Agency officials in other states we interviewed also told us that they did not generally have enough information to conduct a thorough mortality review for individuals receiving limited waiver services. Moreover, the extent to which states used mortality review information to address quality of care varied. For example, while officials in 13 of 14 states told us they used information from individual cases to take actions on the basis of mortality review findings (e.g., to enhance provider training), officials in 3 of 14 states reported conducting further research on issues identified during mortality reviews. In 11 of the 14 states whose officials we interviewed, the screening of similar mortality information, such as the circumstances surrounding a death, was conducted by county-level or regional developmental disabilities agency officials, and the results were used to identify cases for further review. Similarly, in most of these states local developmental disabilities officials undertook a more in-depth mortality review of those cases identified during the screening process as unexpected or suspicious for abuse or neglect, or those in which a possible quality-of-care concern was identified. According to developmental disabilities officials in 11 of the 14 states in which we conducted interviews, similar mortality information, such as the cause of death, was routinely screened at a local level. Local officials collected and used this information to identify suspicious or unexpected deaths, often as part of states’ critical incident management systems. Specifically, local officials screened mortality information such as the cause of death, the circumstances surrounding a death (e.g., whether the death was an accident or witnessed by a direct care provider), and the individual’s diagnoses or clinical conditions prior to death. Screening this information allows local agency officials to identify cases of possible abuse or neglect of Medicaid HCBS waiver beneficiaries and respond to such cases by providing for the safety of other individuals with developmental disabilities cared for in the same setting, as well as referring the cases to the appropriate authorities for criminal investigations. In Florida, for example, local nurses, who were developmental disabilities agency officials, screened information about the circumstances surrounding deaths to determine if they warranted further review. When the local nurses suspected abuse or neglect, adult protective services and law enforcement officials were notified to conduct an investigation. State developmental disabilities officials in a few of the 14 states told us that they also used the screening process to determine if further review should be conducted for expected deaths or for cases not considered suspicious but where possible quality-of-care concerns existed. Based on the results of the screening process, reviews of deaths among individuals with developmental disabilities also occurred at the local level in 11 of 14 states. These 11 states conducted reviews locally because the developmental disabilities agency oversight for waiver services was delegated to counties or regions. In addition to reviewing in greater depth the cause and circumstances surrounding the death and the individual’s clinical diagnoses and health conditions, officials in most of the 14 states told us that they also reviewed hospital records and health care professionals’ progress notes, as well as autopsy findings when available. Lab reports and individual support or behavioral plans might also be reviewed to better understand each case. Reviewing multiple pieces of information surrounding the death is useful because they can show whether appropriate medical care was provided in the days and months before death and whether individual support plans were followed. For example, the mortality review process could reveal that an individual choked to death on solid food but that the individual’s support plan indicated he or she was supposed to receive a pureed diet. Similarly, a review of the medical records of an individual who died from influenza or pneumonia could show whether he or she had received vaccines for these conditions. Mortality reviews also were used to determine whether quality-of-care issues unrelated to the death existed. For example, officials in Ohio told us that in reviewing one death, the documentation in the individual support plan outlining the care that was supposed to be delivered did not match the care that had actually been provided. While the mortality review determined that the care the person received did not contribute to the death, concerns were raised that direct care staff was not following the individual’s support plan. While developmental disabilities agency officials in the 14 states aggregated mortality information statewide, they told us that local-level officials use mortality review information to take local actions to address quality-of-care concerns. Based on mortality review findings, nearly all 14 states had provided tailored training or technical assistance to direct care providers in a particular county or region. For example, when officials in Washington identified an increase in drowning among individuals with seizure disorders in a particular region, the developmental disabilities agency retrained its providers in that region to try to prevent future occurrences. In addition, based on their mortality reviews, officials in Pennsylvania told us they provided targeted training on choking to a local provider because of a trend in choking deaths among individuals with developmental disabilities served by that provider. Officials we interviewed in other states also cited targeted training or assistance to local providers. As shown in table 2, 13 of the 14 states aggregated mortality data. These states aggregated data by variables including age, cause of death, the type of program or services provided to individuals with developmental disabilities, or other programmatic factors to identify trends over time. Officials in these states told us that aggregating mortality data was useful because it allowed them to identify trends, such as determining if particular types of deaths are isolated or part of a pattern. For example, in March 2007, officials from California’s developmental disabilities agency observed an increased mortality rate among individuals with developmental disabilities in one region, and further analysis revealed the increase was attributable to several choking deaths among individuals living in private family homes. This region increased its educational outreach to families on the topic of choking prevention. In addition to aggregating mortality data, Connecticut, Massachusetts, and California calculated mortality rates among individuals with developmental disabilities. Connecticut and Massachusetts officials used aggregated mortality data to make broad comparisons with each other as well as with mortality rates for the general population in their states and across the nation. Officials in Massachusetts also calculated cause-specific mortality rates for individuals with developmental disabilities; they recently found that breast-cancer mortality rates were higher over a 5-year period for Massachusetts’s women with developmental disabilities than for the general state population and nationwide. All but 1 of the 14 states in which we conducted interviews reported aggregating mortality data, and 24 of the 36 states that completed our e-mail survey reported doing so. Combined, 13 of 50 states did not aggregate mortality data, and 37 did. Among these 37 states, more than 80 percent aggregated mortality data on variables that included the cause of death, age, and other factors, such as the county or region where the death occurred, diagnosis at time of death, and whether an autopsy was performed or a medical examiner was involved in the case. In addition, nearly two-thirds of the 37 states nationwide that aggregated mortality data also aggregated on the variable of program type or type of services provided to the individual with developmental disabilities prior to his or her death. Thirteen states nationwide reported they did not aggregate mortality data for these individuals at the time we did our work. Officials in several states in which we conducted interviews said they believed that their mortality review processes had reduced the risk of death and served as one means for improving the quality of services provided in their HCBS waiver programs. However, these states had not documented the impact of reviews on mortality. Officials in some states also said that the reviews had contributed to a decrease in critical incidents, which might have resulted in reduced mortality. For example, a Connecticut state official told us that the implementation of mortality review recommendations, such as improving the competency of direct care staff in managing swallowing risks, had likely reduced the number of critical incidents among individuals with developmental disabilities. In addition, developmental disabilities agency officials in Oregon told us that they believed mortality review findings and subsequent actions, such as enhancing providers’ procedures for handling critical incidents that can result in death, had led to quality-of-care improvements for this population. Officials in 11 of the 14 states we interviewed told us that they considered their mortality review processes for deaths among individuals with developmental disabilities to be one aspect of their waiver’s overall quality improvement strategy. Four of the 14 states whose officials we interviewed—Connecticut, Massachusetts, Minnesota, and Ohio—incorporated all of the additional mortality review components, resulting in more comprehensive mortality reviews. We identified and defined four additional components based on information provided by experts and state officials. In general, these additional components—using state-level interdisciplinary mortality review committees, involvement of external stakeholders, taking statewide actions based on mortality information to improve care, and public reporting—gave the mortality reviews in these states greater accountability and transparency. Eleven of the 14 states had adopted at least one of the additional components. For example, 6 of the 14 states had interdisciplinary mortality review committees that provided additional oversight and added value to local mortality review efforts. Seven of the 14 states routinely included stakeholders external to the developmental disabilities agency in their mortality reviews, and several state officials told us that stakeholder involvement promoted independence or shared accountability. Four of the 14 states whose officials we interviewed incorporated all four additional mortality review components that we identified and defined for more comprehensive review processes. The additional components were identified based on interviews with five developmental disabilities experts and state officials. Another 7 of the 14 states incorporated one or two additional components (Florida, Illinois, New York, Oregon, Pennsylvania, Washington, and Wisconsin). Eleven of the 14 states had adopted at least one of the additional components. The inclusion of these four components—using a state-level interdisciplinary mortality review committee, including external stakeholders in the review process, taking statewide actions based on mortality information to improve care, and publicly reporting mortality information—generally gave the mortality review processes in these states greater accountability and transparency (see table 3). State-level committees include professionals with various experiences in the field of developmental disabilities who review selected deaths to assess factors that may have contributed to death, such as medical or supportive care. Having a representative of the state’s protection and advocacy agency sit on the state-level mortality review committee is one example of how a developmental disabilities agency may routinely involve stakeholders not directly associated with the agency in its review process. When significant quality-of-care concerns are identified by mortality reviews, the state developmental disabilities agency uses such information to take statewide actions, such as requiring specific training for providers’ direct care staff statewide in order to improve care for all waiver beneficiaries. The developmental disabilities agency publicly reports mortality information, such as posting on its Web site aggregated data about the number and causes of deaths among individuals who received care by the agency. States that incorporated additional mortality review components varied in how they implemented them. For example, in Ohio the developmental disabilities agency oversaw its state-level interdisciplinary committee, while in Minnesota the Office of the Ombudsman for Mental Health and Developmental Disabilities provided oversight of its state-level committee, but the committee in Minnesota included a member from the state developmental disabilities agency. In Minnesota, the Office of the Ombudsman, not the state developmental disabilities agency, was also responsible for publicly reporting mortality information on the state’s Web site. Appendix II provides detailed information about the more comprehensive mortality review systems in Connecticut, Massachusetts, Minnesota, and Ohio. In 6 of the 14 states, developmental disabilities agency officials told us that they used state-level interdisciplinary mortality review committees to oversee local review efforts and to add overall value to the review process (see table 4). One aspect of oversight is ensuring consistency in the local- level mortality reviews conducted by developmental disabilities officials across a state. For example, for the purposes of quality assurance, state- level mortality review committees in both Connecticut and Massachusetts reviewed at least 10 percent of cases that local officials had determined did not warrant further review. Massachusetts officials told us that the state’s committee reviewed these cases to ensure that its review procedures were followed, these cases were being appropriately closed locally, and there was consistency across the different local levels conducting reviews. In addition, state-level committees examined in greater depth cases that were medically complex or unusual. For example, in Ohio, the state-level committee recently reviewed a case where an individual died suddenly. The individual had multiple medical conditions, including a history of heart disease, and upon review, the committee found that this individual was taking a medication contraindicated for persons who have or had heart problems. The committee issued a safety alert—a notice to community providers to increase their awareness of a particular risk or safety concern—about the use of this medication by individuals with developmental disabilities who have heart conditions. In another example, the Minnesota state-level review committee reviewed an unusual case where an individual was hospitalized for a minor surgical procedure and discharged. Three days later the individual was readmitted to the hospital with a diagnosis of aspiration pneumonia and an overdose of sedatives and prescription pain medications; after being placed on life support the individual’s condition worsened and life support was withdrawn, resulting in death. After review of the death by the state-level review committee, the developmental disabilities agency issued a safety alert, including a recommendation by the committee for improving the care provided to individuals receiving pain medication. State-level committee reviews were more likely than those at the local level to be conducted by physicians, specifically, physicians with experience treating individuals with developmental disabilities. Of the 6 states that used state-level interdisciplinary mortality review committees, officials in 4 states told us that physicians sat on their committees and routinely reviewed deaths. By contrast, only 1 of the 14 states reported that physicians routinely participated in the local review process. Physician participation is important given the complex medical conditions of individuals with developmental disabilities. For example, Ohio officials told us that it is important for physicians with experience treating individuals with developmental disabilities to review medically complex cases because such physicians are able to assess the adequacy or appropriateness of the medical care provided prior to death. Officials also said that such physicians are highly qualified to evaluate actions taken by other physicians or hospital staff—especially medical personnel without experience caring for individuals with developmental disabilities. For example, one physician serving as Medical Director for a state developmental disabilities agency noted that a death may be inappropriately attributed to natural causes by nonmedical reviewers but a physician’s in-depth review of medical records and medication logs could uncover poor care that contributed to the death. In addition to physicians, state-level interdisciplinary mortality review committees incorporated the knowledge and perspectives of a variety of professionals with differing experiences and responsibility. While physicians and nurses contributed medical and other clinical expertise to the mortality review committees, licensing, public health, investigative, and quality assurance professionals brought other important kinds of expertise. One state official told us that the participation of various types of professionals improved the quality of mortality review findings. Some state officials we interviewed described the value that different professionals brought to mortality reviews. For example, they said that state licensing professionals are best able to assess whether a provider followed state regulations and standards of practice for care. Similarly, an investigator is best suited to evaluate the circumstances of death for possible abuse or neglect. Finally, quality assurance professionals have expertise in monitoring and improving delivery systems and, as a result, can evaluate whether statewide actions may be needed to address identified quality-of-care concerns. According to the 36 states that completed our e-mail survey, the prevalence of state-level interdisciplinary mortality review committees was similar to that in the 14 states whose officials we interviewed—about half had such a committee (18 of 36 states). Combined, 24 of 50 states reported having a state-level review committee, and 26 did not. The types of members on state-level committees in the 36 states we surveyed were similar to those in the 14 states in which we conducted interviews. Among the 24 of 50 states that we interviewed or surveyed that reported having committees, about 80 percent included physicians or nurses, and 67 percent included quality assurance professionals. Nearly half of all states with committees also reported that they included investigative or forensic professionals as well as representatives from the provider community. Seven of the 14 states routinely included stakeholders external to the developmental disabilities agency in their mortality review process. State officials told us they included external stakeholders as a way to promote independence or shared accountability. Four of 7 states used state protection and advocacy agencies regularly for this purpose. For example, in Connecticut an official of the protection and advocacy agency was a member of the developmental disabilities agency’s state-level interdisciplinary mortality review committee. In several of these 7 states, other organizations or state offices with a role in protecting and advocating for the rights of individuals with developmental disabilities also participated in the state developmental disabilities agency mortality reviews, or they conducted their own reviews. In Massachusetts, for example, a representative of the Disabled Persons Protection Commission was a member of the agency’s state-level interdisciplinary mortality review committee, while in Minnesota the Office of the Ombudsman for Mental Health and Developmental Disabilities—a state office separate from the developmental disabilities agency—independently reviewed each death among individuals with developmental disabilities. Several developmental disabilities experts and state agency officials told us that external stakeholder involvement in states’ mortality review processes can promote independence and shared accountability. According to experts, a natural incentive exists for state agency officials to minimize errors or program weaknesses identified through the mortality review process, making independence important. A federal district court found that the District of Columbia’s developmental disabilities agency deleted factual information about eight deaths among individuals with developmental disabilities from death investigation reports in order to minimize quality-of-care concerns. Specifically, information was deleted about delays in obtaining consent for medical procedures and gaps in case management. During our interviews with developmental disabilities agency officials in 14 states, we observed that external stakeholder involvement could also result in shared accountability for improving the quality of care. Because stakeholders may influence how the agency addresses identified quality-of-care concerns, stakeholders may be more likely to support the agency’s efforts to improve the quality of care for individuals with developmental disabilities. The protection and advocacy agencies are of particular value as external stakeholders because of their authority to investigate certain deaths. Moreover, states that receive protection and advocacy funding are required to provide information on the quality of HCBS services to their protection and advocacy agencies, to the extent information is available. We found that state developmental disabilities agencies in 8 of the 14 states were required to report deaths among individuals with developmental disabilities to their state’s protection and advocacy agency. The protection and advocacy agencies received notification in several ways, such as on a case-by-case basis or through the distribution of weekly reports of deaths. Developmental disabilities agency officials in 2 states told us that they granted access to their electronic critical incident management system databases to the protection and advocacy agencies in their states. For example, while the protection and advocacy agencies were not notified of all deaths in Pennsylvania and Ohio, protection and advocacy officials told us they could access death reports among individuals with developmental disabilities by monitoring the critical incident database. In 6 of the 14 states in which protection and advocacy officials were not notified of deaths among individuals with developmental disabilities, protection and advocacy agency officials told us that state developmental disabilities agencies should be required to notify their protection and advocacy agencies of these deaths. Protection and advocacy agencies that did not receive notification of deaths relied on the media or concerned family members to alert them of deaths, but such notification was inconsistent and sometimes happened long after the death occurred. Because abuse and neglect can be difficult to detect among individuals with developmental disabilities, developmental disabilities agency officials may attribute some deaths to known or natural causes, even though abuse or neglect contributed to death. As a result, such cases may not have been referred to investigative authorities, such as medical examiners or the state protection and advocacy agency. One state’s protection and advocacy officials told us that their own investigation of a death after notification by a family member identified care concerns that state developmental disabilities agency and law enforcement officials had not detected. Protection and advocacy officials in two other states found neglect when they conducted reviews of two deaths that the states had determined were due to natural causes. In 11 of the 14 states, mortality reviews resulted in statewide actions to address similar quality-of-care concerns and to help prevent avoidable deaths among individuals with developmental disabilities. The statewide actions resulting from mortality reviews included the issuance of safety alerts, additional or enhanced training of staff, and new risk-prevention practices. The most common statewide action—taken by 9 of the 14 states—was the issuance of safety alerts. For example, after several individuals with developmental disabilities in Minnesota died, in part because of delayed emergency medical care, the agency sent a statewide safety alert to service providers with recommendations to prevent similar incidents, including that community providers authorize their direct care staff to call 911 when they suspect a medical emergency without first obtaining approval from a manager. In Ohio, officials alerted agency staff to an increase, from 2005 to 2006, in the number of deaths statewide resulting from aspiration pneumonia. As a result, these officials encouraged agency staff statewide to closely examine hospitalization cases resulting from pneumonia and to train care providers on risk factors to help prevent this condition. In 7 of the 14 states, developmental disabilities agencies provided additional or enhanced training to staff statewide, and in 6 of the 14 states they developed new risk prevention interventions for providers statewide. As a result of several choking deaths, the Connecticut developmental disabilities agency developed a training program on swallowing risks that addressed the responsibilities of providers when caring for individuals with swallowing disorders. The agency also required that all direct care staff who provided care to individuals with developmental disabilities receive this training. Based on mortality review findings, Oregon’s developmental disabilities agency developed an assessment tool to be completed and regularly updated on individuals with developmental disabilities to identify and properly address risks associated with deaths among this population, including choking, dehydration, constipation, seizures, and falls. Several nurses in Oregon told us that they believed the use of the risk assessment tool had led to improvements in the quality of care provided to individuals with developmental disabilities. According to responses to our e-mail survey by the other 36 states, 19 state developmental disabilities agencies reported taking a statewide action to improve care based on mortality information. When combined with the 14 states in which we conducted interviews, 30 of 50 states took a statewide action, while 20 did not. The most frequently cited statewide actions nationwide—including the 36 states that completed our e-mail survey— were the issuance of safety alerts, additional or enhanced training of staff, and new risk-prevention practices. In total, 60 percent of states nationwide addressed quality-of-care concerns through such actions. Based on examples provided, choking was the most frequently addressed quality-of- care concern nationwide. For example, among states that reported taking a statewide action, 43 percent addressed choking with a statewide action, such as additional training. Other quality-of-care concerns for which multiple states took statewide actions included treating bowel disorders, addressing problems with emergency procedures and medications, and coordinating care across various providers and settings. Four of the 14 states publicly reported mortality information by publishing summaries of aggregated data or more detailed reports about their mortality review processes and findings. For example, Ohio annually reported aggregated mortality data on its agency Web site, which included the number of deaths among individuals with developmental disabilities and a list of the most common causes of death. Massachusetts and Connecticut have posted annual mortality reports on their agency Web sites, which included mortality statistics for the population of individuals with developmental disabilities served by their agencies as well as trend analyses of those deaths over time. According to agency officials in Massachusetts, publicly reporting information about mortality review findings helps to ensure transparency in the mortality review process and demonstrates to the public areas where the agency should direct its efforts to improve the quality of care. While 10 of the 14 states we interviewed told us that they do not make their findings publicly available, state officials in California, Pennsylvania, and Washington told us that they had provided such information to select stakeholders or to others when requested. Reviewing the deaths of individuals with developmental disabilities as critical incidents in the Medicaid HCBS waiver program is one of several mechanisms states can use to ensure that this vulnerable population is protected from harm and to address quality-of-care concerns. All 14 states whose officials we interviewed included death among individuals with developmental disabilities as a critical incident in their waiver programs. Nearly all of the 14 states had some processes in place for conducting mortality reviews of individuals with developmental disabilities, even though CMS does not have an expectation for states to review deaths as critical incidents under the waiver program. Most of the 14 states implemented basic components of mortality review processes that experts we interviewed agreed were important, such as the review of unexpected or suspicious deaths. Several states also implemented additional components, such as using a state-level interdisciplinary committee to review individual deaths and routinely including external stakeholders, for more comprehensive mortality review systems. We do not know the extent to which all components were implemented in states we did not interview. However, based on information provided by all states nationwide, (1) 13 states did not aggregate mortality data (a basic component for mortality reviews), (2) 26 states did not utilize an interdisciplinary mortality review committee to review deaths among individuals with developmental disabilities (an additional component), and (3) 20 states had not taken a statewide action to improve care based on mortality review information (an additional component). Moreover, the extent to which states other than the 14 whose officials we interviewed identified death as a critical incident has not been established. Given the concern that agency officials may minimize identified program weaknesses, routinely including external stakeholders—such as the state office of protection and advocacy—is especially important because it promotes accountability and independence to the state mortality review process. When alerted to suspicious deaths, state protection and advocacy agencies can conduct their own investigations, but not all protection and advocacy agencies were systematically notified of deaths by state developmental disabilities agencies and instead relied on the less consistent or less timely notification of deaths by the media or concerned family members. Many of the states whose officials we interviewed told us that they considered their mortality review system to be one aspect of their strategy to improve the quality of care in their Medicaid HCBS programs. CMS has recently made some important changes in an effort to clarify its quality expectations for HCBS waivers, such as requesting that states describe their quality improvement strategies as part of the waiver application. In addition, a provision of the Deficit Reduction Act of 2005 requires the development of specific quality measures, and CMS may adopt the measures if it determines that they reinforce the agency’s expectations for states regarding quality improvement. To help states identify and address quality-of-care concerns among individuals with developmental disabilities receiving Medicaid HCBS waiver services, we recommend that the Administrator of CMS take the following two actions: Disseminate information to states about basic and additional components for mortality reviews. include death as a critical incident and conduct mortality reviews if they do not already do so and broaden their mortality review processes if they already include death as a critical incident and conduct mortality reviews. To provide additional oversight of the quality of care provided to these individuals, we also recommend that the Administrator of CMS establish as an expectation for HCBS waivers that state Medicaid agencies report all deaths among individuals with developmental disabilities receiving such waiver services to their state office of protection and advocacy. We obtained written comments from HHS on our draft report. HHS generally concurred with two of our three recommendations, and did not respond as to whether it agreed or disagreed with one recommendation. HHS’s comments are included in appendix III. In its general comments, HHS stated that not all deaths in the community are adverse events and that the ability to die at home with appropriate supports is a positive outcome. Our report does not state or suggest that all such deaths are adverse outcomes; however, we did report that all deaths of individuals with developmental disabilities served by Medicaid HCBS waiver programs should be screened to determine whether further review is warranted. HHS also stated the importance of ensuring that any actions taken to address our recommendations are applicable to all populations served by HCBS waiver programs (e.g., the aged) and not just individuals with developmental disabilities. While the focus of our report was specifically on individuals with developmental disabilities who are vulnerable and often have complex medical needs, we support HHS’s encouraging states to utilize mortality reviews as one aspect of their quality improvement strategy for all populations served by 1915(c) waiver programs. Our evaluation of HHS’s specific comments on each of our recommendations follows. Disseminate information to states about basic and additional components for mortality reviews. HHS responded that CMS concurred with our recommendation and will disseminate the information through its stakeholders, including the National Association of State Directors of Developmental Disabilities Services, the National Association of State Medicaid Directors, and the National Association of State Units on Aging. HHS also stated that CMS will involve these stakeholders in a discussion on the topic of mortality reviews to help determine whether the six basic components we identified are applicable to other populations served by Medicaid 1915(c) waiver programs. Encourage states to include death as a critical incident and conduct mortality reviews if they do not already do so; and encourage states to broaden their mortality review processes if they already include death as a critical incident and conduct mortality reviews. HHS responded that CMS concurred with this recommendation. However, the agency did not fully address it. HHS’s comments state that CMS will initiate a meaningful dialogue with its stakeholders to encourage states’ broader use of processes to review suspicious deaths. As noted in our report, however, screening mortality information about all deaths among individuals with developmental disabilities is a basic component of a mortality review system and is necessary to determine whether further review of each death is warranted—including but not limited to those deaths involving suspected abuse or neglect, or that were unexpected. CMS did not directly address part of our recommendation that it should encourage states that do not already do so to include death as a critical incident. We continue to believe that this is important because states are expected to report and review critical incidents and take follow-up actions when a beneficiary is not being safeguarded. In addition, states may use information from their critical incident reviews to identify areas for improving care provided to waiver beneficiaries. Establish an expectation that state Medicaid agencies report all deaths among individuals with developmental disabilities receiving waiver services to their state’s office of protection and advocacy. HHS did not respond as to whether CMS agreed or disagreed with this recommendation but recognized independent third-party reviews as important. HHS also believes it is important that CMS’s actions taken to address our recommendations apply uniformly to all populations served by 1915(c) waiver programs. According to a CMS official, the agency’s goal is to have a consistent set of expectations for all waiver populations served instead of expectations tailored to specific populations. The elderly would be one such population. Given this goal, HHS commented that it may be difficult to require the reporting of all deaths of individuals being served by these waiver programs to the state offices of protection and advocacy because these offices focus primarily on individuals with developmental disabilities. We continue to believe that the state protection and advocacy agencies are the most appropriate entities for reporting deaths among individuals with developmental disabilities, a vulnerable population that often has complex medical needs. However, in developing a uniform approach to individuals served by waiver programs, we agree that CMS should focus on the benefit of independence in the review process, recognizing that it may not be appropriate for the same entities to be involved for all populations served by waivers. HHS also provided a technical comment and clarification, which we responded to as appropriate. As arranged with your office, unless you publicly announce its contents earlier, we plan no further distribution of this report until 30 days after its issue date. At that time, we will send copies of this report to the Secretary of Health & Human Services, the Administrator of CMS, and appropriate congressional committees. We will also make copies available to others upon request. The report will also be available at no charge on the GAO Web site at http://www.gao.gov. If you or your staff have any questions about this report, please contact me at (202) 512-7114 or dickenj@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made major contributions to this report are listed in appendix IV. To assess state mortality review processes for individuals with developmental disabilities served by Medicaid HCBS waivers, we (1) worked with experts in the field of developmental disabilities to identify mortality review components, (2) collected detailed information on death as a critical incident and mortality review processes in 14 states, and (3) conducted a brief e-mail survey focusing broadly on aspects of mortality review processes in the other 35 states and the District of Columbia. We did not evaluate the effectiveness of state mortality review systems. However, the data we collected allowed us to make comparisons across states and to identify states with comprehensive mortality review processes. To identify basic components of state mortality review processes, we conducted a literature review, interviewed five experts in the field of developmental disabilities, and reviewed documents authored by these experts (e.g., a criteria-and-standards checklist for conducting mortality reviews). These experts were either recommended by CMS officials, referred to us by other officials that we interviewed during the engagement, or were individuals we had contacted during a previous engagement. Along with state developmental disabilities agency officials who conduct mortality reviews, these experts also contributed to the identification of additional components for more comprehensive state mortality review processes. There may be other components for mortality reviews that were not brought to our attention. In addition, these experts guided our selection of states for on-site visits by identifying states they knew to have well-established mortality review processes. We collected information and interviewed officials about death as a critical incident and mortality review processes for individuals with developmental disabilities in 14 states. These 14 states served approximately two-thirds of Medicaid waiver beneficiaries with developmental disabilities nationally. The mortality review processes of this sample of 14 states cannot be generalized to all states nationwide. First, we visited four states (Connecticut, Ohio, Oregon, and Texas) to gain an understanding of state developmental disabilities systems and mortality review processes and to facilitate the development of interview protocols for the remaining 10 states. We used the following criteria to select these four states: (1) the extent to which a state had a well- established mortality review process, as recommended by experts; (2) the raw number of individuals in a state with developmental disabilities being served by Medicaid HCBS waivers relative to other states; (3) the proportion of all individuals in a state with developmental disabilities receiving services in the community under Medicaid HCBS waivers rather than in institutions, relative to other states; and (4) geographic variation. During the four site visits, we collected and reviewed mortality review documents such as policies and procedures, annual mortality review reports, and health and safety alerts distributed to providers based on mortality review findings. The officials we interviewed included Medicaid directors, developmental disabilities agency medical directors and administrators, members of state mortality review committees, quality assurance and critical incident professionals, or other professionals knowledgeable about the state’s mortality review processes. We also interviewed representatives from the state offices of protection and advocacy or other external stakeholders involved in these states’ mortality review processes. Second, to expand our understanding of how states review and use mortality information, we collected similar information from and conducted focused telephone interviews with developmental disabilities officials in the other 10 states that served the largest number of individuals with developmental disabilities through Medicaid HCBS waivers. We also conducted focused telephone interviews with officials from state protection and advocacy agencies in these 10 states and in the District of Columbia. We sent a three-question e-mail survey that focused on three aspects of state mortality review processes to developmental disabilities agency officials in the other 35 states and the District of Columbia. Specifically, we asked agency officials if they had a statewide interdisciplinary mortality review committee, if they aggregated mortality information for this population, and if they had implemented a statewide action based on mortality review findings. We focused on these three issues because of the value identified by experts and state officials in (1) using an interdisciplinary approach to reviewing certain deaths, (2) using aggregated data in addition to individual mortality cases to identify trends or patterns of deaths among individuals with developmental disabilities, and (3) using mortality information to take statewide actions to improve the system of care overall. We followed up with nonrespondents using e-mail reminders and telephone calls, and achieved a 100 percent response rate to our survey. developmental disabilities offices manage 23 local area offices responsible for managing and monitoring services provided to individuals with developmental disabilities. State’s central developmental disabilities office provides oversight to regional and local area offices. developmental disabilities officials in 87 county offices provide operational oversight of the local provision of waiver services to individuals with developmental disabilities. State’s central developmental disabilities office provides oversight to the counties. developmental disabilities agency staff oversees the local provision of waiver services to individuals with developmental disabilities. State’s central office provides oversight to 88 county developmental disabilities agency offices. Components of mortality review process developmental disabilities officials collect and screen standardized information about deaths among persons with developmental disabilities, including demographic information, location and cause of death, and whether the death was anticipated or unexpected. If a death is considered suspicious for abuse or neglect, appropriate authorities are notified to ensure the safety of other community-based residents or to initiate a criminal investigation, as appropriate. information about deaths among persons with developmental disabilities is collected and screened by area and state-level agency staff. This information includes cause and manner of death, whether the death was unexpected or occurred under suspicious circumstances, the level of mental retardation (including whether the individual had Down’s syndrome), and whether or not the medical examiner took jurisdiction over the body. developmental disabilities officials collect and screen standardized information about deaths among persons with developmental disabilities, including demographic information, location and cause of death, circumstances of the death, and the clinical diagnoses of the deceased. investigative agents for the developmental disabilities agency collect standard information about deaths among persons with developmental disabilities, including location of death, whether the death was unexpected, and circumstances surrounding the death. If a death is considered suspicious for abuse or neglect, appropriate authorities are notified to ensure the safety of other community-based residents or to initiate a criminal investigation, as appropriate. If a death is considered suspicious for abuse or neglect, appropriate authorities (including the county coroner) are notified to ensure the safety of other community- based residents or to initiate a criminal investigation, as appropriate. If a death is considered suspicious for abuse or neglect, appropriate authorities are notified to ensure the safety of other community-based residents or to initiate a criminal investigation, as appropriate. Ombudsman for Mental Health and Developmental Disabilities also screens standardized information about deaths among persons with developmental disabilities. All unexpected or suspicious deaths among individuals with developmental disabilities receiving community care by the state developmental disabilities agency are routinely reviewed at a regional level. Nonsuspicious and expected deaths are also reviewed at the regional level. All unexpected or suspicious deaths among individuals with developmental disabilities receiving more than 15 hours of residential support, or who die in a day support or habilitation program or who die during transportation arranged by the state developmental disabilities agency, are routinely reviewed. Nonsuspicious and expected deaths among this population are also routinely reviewed but at the regional level. individuals with developmental disabilities receiving community care by the state developmental disabilities agency are reviewed at the county and state levels. Deaths under suspicion for involving abuse or neglect are also reviewed by county- based investigators. All unexpected or suspicious deaths among individuals with developmental disabilities receiving community care by the state developmental disabilities agency are routinely reviewed. Nonsuspicious and expected deaths among this population receive a less- extensive review at the state level. include developmental disabilities nurse investigators and members of the regional mortality review committee, which is composed of (at a minimum) a registered nurse not employed by the developmental disabilities agency, the regional office health services or nursing director, the case management supervisor, the quality improvement director, and a client advocate. In addition, regional reviews may also include the nurse investigator, the former case manager of the deceased, and a nurse involved with the person’s care prior to death. include developmental disabilities agency nurses and members of the regional mortality review committee, which is composed of (at a minimum) a nurse or physician, or both, and an agency quality assurance professional. In addition, regional mortality review discussions may also include additional regional nurses or area office directors or assistant directors. include primarily case managers but also nurses or other developmental disabilities officials with previous experience providing direct services to individuals with developmental disabilities. These professionals consult with public health nurses or the agency medical director, as needed, to complete their reviews. investigative agents include registered nurses, case workers, or licensed social workers. These agents consult with physicians on the statewide mortality review committee, as needed, if they have questions during the course of their local-level mortality review. disabilities agency nurse investigators covering the regions conduct desk reviews into the circumstances surrounding the death; interview parties associated with the death; review medical professional progress notes and autopsy reports; and provide this information to the regional mortality review committees in a written report. developmental disabilities case managers or other reviewers conduct desk reviews into the circumstances surrounding the death and review medical professional progress notes from the direct care provider(s), when available. These officials share their reviews with county- level developmental disabilities managers. review committee reviews the overall care, quality-of-life issues, and health care preceding the death of each individual with conduct desk reviews and complete mortality review forms addressing the circumstances surrounding the death and the overall care provided prior to death, including but not limited to medical and medication histories, functional status of the individual, and information from death certificates and autopsy reports, when available. Local area nurses also interview care providers. investigators conduct independent reviews of cases that are suspicious for abuse or neglect. investigative agents collect and review 14 standard pieces of information on each case to determine if the case warrants further review of quality-of-care concerns. This information includes but is not limited to medical diagnoses prior to death; death certificate; narrative surrounding the circumstances of death; at least 72 hours’ worth of caregiver notes prior to time of death; medication use; and autopsy findings or coroner’s report, developmental disabilities. This committee may close the case or refer it to the state-level review committee. as appropriate. mortality review committees discuss the area nurses’ reviews and determine if a death should be referred to the state-level mortality review committee. investigative agents can specifically refer a case to the state-level interdisciplinary committee for discussion. review committee documents and maintains its findings and recommendations on a standard form. committee documents its mortality review process. review committee documents its meetings, including the agenda and recommendations. recommendations from the mortality review process are documented in the incident tracking system. aggregated on the basis of the following factors: cause of death, age, location of death, gender, program service type, the individual’s level of functioning, and service delivery provider(s). aggregated on the basis of the following factors: cause of death, age, location of death, gender, and program service type. aggregated on the basis of the following factors: cause of death, age, and service delivery provider. aggregated on the basis of the following factors: cause of death, age, location of death, gender, program service type, level of functioning, and county. developmental disabilities agency assesses trends over time in the leading causes of death among individuals with developmental disabilities. developmental disabilities agency assesses trends over time and analyzes aggregated mortality data. developmental disabilities agency and the mortality review committee review aggregated data and assess trends over time in the leading causes of death among individuals with developmental disabilities. developmental disabilities agency and mortality review committee assess trends over time in the leading causes of death for individuals with developmental disabilities. Each county has a designated quality assurance person(s) responsible for identifying and discussing critical incident trends (including deaths) with other county- or state- level quality assurance professionals. membership includes directors of Health and Clinical Services, Quality Assurance, and Investigations for the developmental disabilities agency; the state medical examiner; a physician; a supervising nurse consultant from the Department of Public Health; two individuals appointed by the protection and advocacy agency; and a director of nursing from the developmental disabilities agency. membership includes the following professionals from the developmental disabilities agency: physicians, nurses, quality assurance officials, and legal staff. Membership also includes representatives from the public health department and investigative unit, pharmacists, and members of the office of protection and advocacy and the stakeholder group Disabled Persons Protection Commission. includes a psychiatrist, forensic pathologist, registered nurse, pharmacist, internist, and a quality assurance official from the state developmental disabilities agency. membership includes physicians; professionals with expertise in the field of developmental disabilities; state protection and advocacy agency and other advocacy organization representatives; and state agency officials from the critical incident management, quality assurance, and licensure divisions. state-level interdisciplinary independent mortality review committee in 2002 specifically to review deaths of individuals with developmental disabilities. state-level interdisciplinary mortality review committee in 1999 specifically to review deaths of individuals with developmental disabilities. state-level interdisciplinary mortality review committee in 2001 specifically to review deaths of individuals with developmental disabilities. state-level interdisciplinary mortality review committee in 1987 to systematically review deaths of individuals receiving services or treatment for developmental disabilities, mental illness, chemical dependency, or emotional disturbance. operates at the state level to provide an independent review by qualified professionals unrelated to the deceased and ensures that regional reviewers fully evaluated the health and overall care provided to the individual, including quality-of-life issues. The committee identifies both regional and systemic issues, and makes recommendations and identifies corrective operates at the state level as part of the developmental disabilities agency’s quality management strategy. The committee uses its findings through the mortality review process to improve the quality of care and supports provided by the developmental disabilities agency to persons with developmental disabilities. overseen by the Office of the Ombudsman for Mental Health and Developmental Disabilities. It is designed to objectively and systematically monitor circumstances surrounding deaths and to provide an opportunity to evaluate quality of care from an individual and operates at the state level to review all deaths of such individuals to identify and address any case- specific, facility- specific, or systemwide issues that could improve the care provided to other individuals in this community. the committee review reports submitted by county-level investigative agents on all deaths and may actions accordingly. systemwide perspective. discusses all cases identified by the regional review committees as needing further discussion and also reviews at least 10 to 15 percent of those cases closed at the regional level for quality assurance purposes—i.e., to ensure consistency in the review process throughout the state and ensure that cases do not escape scrutiny in terms of quality-of- care or systemic issues. established criteria to determine which types of deaths it will review in-depth. For example, it reviews deaths that may have resulted from undiagnosed conditions or delayed medical care as well as those that may be related to abuse or neglect. The committee also reviews cases where family members have requested a review. close out the case or refer it to the full committee for discussion when quality-of-care concerns are identified. The committee also discusses cases referred to it by county-level investigative agents. The committee meets quarterly and reviews mortality information on selected developmental disabilities deaths as well as quarterly and annual trends in mortality. at least quarterly and more frequently as necessary. discusses all deaths that meet set criteria for review, including but not limited to those deaths that are sudden, unanticipated, or accidental; or those related to accidental choking, bowel impaction, or an adverse drug event. The committee also reviews any other cases referred to it by the regional committees because of other concerns identified. It also reviews 10 percent of those cases closed at the regional level for quality assurance purposes—to ensure consistency across regions and the closure of appropriate cases— and routinely reviews nonsuspicious or expected deaths. In contrast to the more in-depth reviews conducted by the committee, a registered nurse within the Office of the Ombudsman reviews all deaths among individuals with developmental disabilities using a less comprehensive procedure. monthly. meets every other month. its annual mortality review report and other mortality data on its developmental disabilities agency Web site. committee makes mortality information available publicly on its developmental disabilities agency Web site. It distributes mortality information to the Governor’s office, advocacy organizations, regional and area developmental disabilities staff, and providers. Ombudsman makes public a biannual report to the Governor on the Ombudsman’s Web site, which includes information on the number of deaths and their causes. incident tracking system, information about each death, including local- and state-level reviews, is available to providers and developmental disabilities agency professionals across the state and to the state’s protection and advocacy agency. committee also presents its findings annually to the agency’s quality councils. disseminate critical information related to particular deaths to providers and other stakeholders through the electronic incident tracking system and are required to be reviewed by all developmental disabilities agency employees as part of annual training. are posted on the agency’s Web site. and advocacy agency receives information weekly about deaths among individuals with developmental disabilities. By the Governor’s systematically report information about deaths among individuals with developmental disabilities to the state protection and advocacy agency. Executive Order, an independent fatality review board was created and is housed in the state’s protection and advocacy agency to conduct independent mortality reviews, “outside” of the developmental disabilities agency. and advocacy agency is notified of deaths among individuals with developmental disabilities who were receiving services from the state developmental disabilities agency. The protection and advocacy agency rarely conducts its own investigation of these deaths because of the reviews being conducted by both the developmental disabilities agency and the Disabled Persons Protection Commission, which the protection and advocacy agency helped establish to protect individuals with developmental disabilities. advocacy agency can conduct investigations of deaths on a case-by- case basis. and advocacy agency has direct access to the electronic incident tracking system, which includes information on all deaths among persons with developmental disabilities as well as mortality review information. Ombudsman provides independence to the review of deaths because the office is a state entity independent of the developmental disabilities agency. advocacy agency and another active developmental disabilities advocacy organization in the state participate as standing members on the statewide mortality review committee. Persons Protection Commission is a state government entity independent of the state developmental disabilities agency. It is notified by the agency of all deaths and conducts investigations of some deaths (e.g., unexpected deaths or those considered suspicious for abuse or neglect). A representative from the commission also sits on the agency’s state-level mortality review committee. In 2006, after several individuals with developmental disabilities died from preventable choking incidents, the developmental disabilities agency initiated a statewide safety campaign with a focus on swallowing disorders as an area of risk. In 2007, the state developmental disabilities agency required that all current direct care staff receive ongoing training on swallowing disorders and that all service delivery providers have internal policies about how they will identify and manage swallowing risks for individuals with developmental disabilities that they serve. higher mortality rate for female breast cancer in the developmentally disabled population compared with other populations, in 2005 the state developmental disabilities agency began developing computer-based training targeted to direct care staff on preventive screenings, including cancer screenings. In 2007, after several individuals developed a serious condition or died prior to receiving treatment, the developmental disabilities agency sent an alert to service providers with recommendations to reduce the likelihood of similar incidents. For example, the alert recommended that programs authorize caregivers to call 911 without approval from a management staff person when a medical emergency is suspected. developmental disabilities agency issued a safety alert on choking in 2006 because of concerns about an increased number of deaths from choking that occurred in 2006 compared with 2005. Based on a trend in unplanned hospitalizations related to pneumonia, and higher death rates from aspiration pneumonia than in previous years, the agency issued a safety alert in 2006 about pneumonia and encouraged the use of vaccinations to prevent similar deaths. several individuals with developmental disabilities whose deaths involved swallowing disorders, the agency developed protocols in 2006 on how to treat swallowing disorders and trained direct care staff on symptoms and treatment. In addition to the contact named above, key contributors to this report were Walter Ochinko, Assistant Director; Stefanie Bzdusek; Pamela Dooley; Sara Imhof; Elizabeth T. Morrison; and Andrea E. Richardson.

Summary: Deaths of individuals with developmental disabilities due to poor quality of care have been highlighted in the media. Prior GAO work has raised concerns about inadequate safeguards for such individuals receiving care through state Medicaid home and community-based services (HCBS) waivers. CMS approves and oversees these waivers. Safeguards include the review of, and follow-up action to, critical incidents--events that harm or have the potential to harm waiver beneficiaries. GAO was asked to examine the extent to which states (1) include, as a critical incident, deaths among individuals with developmental disabilities in waiver programs; (2) have basic components in place to review such deaths; and (3) have adopted additional components to review deaths. GAO interviewed state developmental disabilities agency officials and external stakeholders in 14 states, e-mailed a survey to 35 states and D.C., interviewed experts, and reviewed documents. All 14 states whose officials GAO interviewed included death among individuals with developmental disabilities as a critical incident in their waiver programs. The developmental disabilities agencies in all 14 states required waiver service providers to report such deaths to the agencies. Consistent with CMS's expectation that states review critical incidents, nearly all states had processes in place to review these deaths. The extent to which states other than these 14 identified death as a critical incident has not been established. All but 1 of the 14 states included most of the six basic mortality review components identified as important by experts when reviewing deaths among individuals with developmental disabilities, but states varied somewhat in how they implemented components. For example, some states reviewed unexpected deaths only, while other states reviewed all deaths of individuals receiving Medicaid HCBS services. Mortality reviews were typically conducted at a local level, such as a county or region. Review findings led to local actions, such as tailored training with individual providers, to address quality of care. Officials in 13 of the 14 states reported that they aggregated mortality data, for example, by cause of death and age, whereas nationwide, 37 of 50 states aggregated mortality data and 13 states did not. For example, one California region observed an increase in choking deaths among individuals with developmental disabilities in 2007 and increased its educational outreach to families about choking prevention. Officials in several states said they believed their mortality reviews had reduced the risk of death and led to improvements in the quality of their HCBS waiver services. Four of the 14 states incorporated all additional components for more comprehensive mortality reviews. In general, these four additional components--state-level interdisciplinary mortality review committees, involvement of external stakeholders, statewide actions to address problems, and public reporting--gave the mortality reviews in these states greater accountability and transparency. Eleven of the 14 states had adopted at least one of these additional components. For example, 6 of the 14 states had interdisciplinary mortality review committees that reviewed deaths and that provided additional oversight to local review efforts, whereas nationwide, 24 of 50 states had review committees, and 26 states did not. In 6 of the 14 states, developmental disabilities agencies were not required to report deaths to the state protection and advocacy agencies, a key external stakeholder with authority to investigate deaths involving suspected abuse and neglect. Mortality reviews in 11 of the 14 states resulted in statewide actions, such as the issuance of safety alerts or new risk-prevention practices, to address quality-of-care concerns. Nationwide, 30 of 50 states took a statewide action to improve care, while 20 states did not. Four of the 14 states publicly reported mortality review information, such as posting annual mortality reports on their agency Web sites.