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.