Medicaid Home and Community-Based Waivers: CMS Should Encourage States to Conduct Mortality Reviews for Individuals with Developmental Disabilities
Published: 2008-05-23T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: Medicaid, the joint federal-state health care financing program for  qualifying low-income individuals, plays a major role in the financing of  community-based long-term care for individuals with developmental  disabilities, including those with mental retardation. In 1981, Congress  passed section 1915(c) of the Social Security Act, which allowed states to  provide long-term care services, including personal care, day care,  transportation, and home modification, through Medicaid home and  community-based services (HCBS) waivers. While individuals with  developmental disabilities had often been cared for in large institutions,  Medicaid waivers allowed them to receive services in residential settings  such as small group homes or in the homes of parents or relatives. The  Centers for Medicare & Medicaid Services (CMS), the federal agency that  manages Medicaid, is responsible for ensuring that states satisfactorily  provide statutorily required assurances for HCBS waivers, which include  having necessary safeguards to protect the health and welfare of waiver  beneficiaries. To support this particular assurance, CMS requests states to  specify which critical incidents—events that bring harm or have the  potential to bring harm to waiver recipients—must be reported for review  and follow-up action. CMS identifies death as an example of a critical  incident, but does not specify how states should review deaths.
Our 2003 report raised concerns about the need for CMS to provide states  with more detailed criteria regarding the necessary components of an  HCBS waiver quality assurance system, and about the limited information  provided by states to CMS on their mechanisms to monitor the quality of  care provided to waiver beneficiaries. Since 2004, several local and  national newspapers have reported on deaths that resulted from poor  quality of care among individuals with developmental disabilities living in  group homes. Individuals with developmental disabilities are vulnerable  because of their cognitive and physical impairments and dependency on  caregivers for assistance with many activities of daily living, such as eating  and bathing. For example, a 63-year-old man with visual impairment,  arthritis, and significant cognitive disabilities was living in a group home  that provided supportive care in the community and also offered  recreational activities. According to his legal guardians, they were notified  in 2004 that he had suffered a fatal heart attack. In part because he did not  have a history of heart problems, his guardians requested an autopsy. The  autopsy report identified quality-of-care concerns: the individual choked to  death on what appeared to be part of a sandwich, even though he was  supposed to be fed pureed food. A subsequent investigation of the death  and conditions in the group home found that the home was understaffed  and that staff did not consistently prepare meals to meet the special needs  of residents.
In light of concerns about deaths resulting from poor quality of care and  inadequate oversight of individuals with developmental disabilities  receiving community-based care, you asked us to review states’ current  processes for conducting mortality reviews and states’ use of mortality  information to address quality-of-care concerns in Medicaid’s HCBS  waiver program. Specifically, we examined the extent to which (1) states  include death among individuals with developmental disabilities as a  critical incident in waiver programs, (2) states have some basic  components in place to review deaths of individuals with developmental  disabilities in waiver programs, and (3) states have incorporated any  additional components to review deaths of individuals with developmental  disabilities in waiver programs.
To assess whether states include death among individuals  with developmental disabilities as a critical incident in waiver programs,  we conducted interviews with state developmental disabilities agency  officials in 14 states. To identify the basic components of a mortality  review process, we conducted a literature review, interviewed experts in  the field of developmental disabilities, and reviewed documents authored  by these experts. These experts and state developmental disabilities  agency officials who conduct mortality reviews also contributed to the  identification of additional components of more comprehensive mortality  review processes. There may be other components for mortality reviews  that were not brought to our attention. To determine the extent to which  states incorporate both these basic and additional components into  mortality reviews, we conducted interviews with state developmental  disabilities agency officials in the 14 states and reviewed documents  related to their mortality review processes. We visited 4 of the 14 states  (Connecticut, Ohio, Oregon, and Texas) to gather detailed information  about how states review deaths of individuals with developmental  disabilities. We selected these four states because, among other  characteristics, they had well-established mortality review processes or a  large number of individuals with developmental disabilities being served  through a Medicaid HCBS waiver. We conducted focused telephone  interviews with the other 10 of 14 states that served the largest number of  individuals with developmental disabilities through Medicaid HCBS  waivers. Combined, these 14 states served approximately two-thirds of  Medicaid waiver beneficiaries with developmental disabilities nationally in  2005. However, the mortality review processes of this sample of 14 states  cannot be generalized to all states nationwide. We conducted a brief e-mail  survey of state developmental disabilities officials in the other 35 states  and the District of Columbia requesting information on three broad  aspects of mortality review processes. We also conducted interviews with  state protection and advocacy agencies in the 14 states and the District of  Columbia. Although we did not evaluate the effectiveness of state  mortality review processes, the data we collected allowed us to make  comparisons across states and to identify states with more comprehensive  mortality review processes. We conducted our review from December  2006 through April 2008 in accordance with generally accepted  government auditing standards. (For a more detailed description of our  scope and methodology, see app. I.)
subsections: section_title: Background
paragraphs: 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.
subsections: section_title: Eligibility
paragraphs: 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.
section_title: Waiver Quality
paragraphs: 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.
section_title: State Operation of Waiver Programs
paragraphs: 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.
section_title: Protection and Advocacy Agencies
paragraphs: 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.
section_title: All States Whose Officials We Interviewed Include Death as a Critical Incident
paragraphs: 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.
section_title: Six Basic Mortality Review Components Identified as Important by Experts Are Used by Most States Whose Officials We Interviewed
paragraphs: 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.
subsections: section_title: Six Basic Components Identified as Important for Mortality Reviews
paragraphs: 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.
section_title: Thirteen of 14 States Incorporate Most of the Basic Mortality Review Components, but Some Variation Exists
paragraphs: 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.
section_title: Screening Similar Mortality Information and Reviewing Unexpected Deaths Occurs Locally in Most States Whose Officials We Interviewed
paragraphs: 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.
subsections: section_title: Similar Mortality Information Usually Screened Locally
paragraphs: 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.
section_title: Mortality Reviews Mostly Conducted Locally
paragraphs: 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.
section_title: Many Actions to Address Quality of Care Taken Locally, While Mortality Information Is Aggregated Statewide in 13 of 14 States
paragraphs: 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.
section_title: Officials in Several States in Which We Conducted Interviews Believed Mortality Reviews Reduce Risk of Death and Improve Quality of Care
paragraphs: 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.
section_title: A Few of the 14 States Incorporate Additional Components, Resulting in More Comprehensive Mortality Reviews
paragraphs: 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.
subsections: section_title: Additional Mortality Review Components Provide Greater Accountability and Transparency
paragraphs: 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.
section_title: State-Level Interdisciplinary Mortality Review Committees Conduct Reviews and Provide Local Review Oversight in 6 of the 14 States
paragraphs: 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.
section_title: Half of the 14 States Routinely Include External Stakeholders in Mortality Reviews, Promoting Independence or Shared Accountability
paragraphs: 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.
section_title: Mortality Reviews Result in Statewide Actions to Address Similar Care Concerns and to Help Prevent Deaths in Most of the 14 States
paragraphs: 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.
section_title: Four of 14 States Publicly Report Mortality Information
paragraphs: 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.
section_title: Conclusions
paragraphs: 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.
section_title: Recommendations for Executive Action
paragraphs: 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.
section_title: Agency Comments and Our Evaluation
paragraphs: 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.
section_title: Appendix I: Scope and Methodology
paragraphs: 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.
subsections: section_title: Identification of Mortality Review Components
paragraphs: 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.
section_title: Information on Death as a Critical Incident and Mortality Review Processes from 14 States
paragraphs: 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.
section_title: E-Mail Survey to the Remaining 35 States and the District of Columbia
paragraphs: 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.
section_title: Appendix II: Description of More Comprehensive Mortality Review Systems Implemented by Four States
subsections: section_title: developmental disabilities agency directors oversee operational aspects of the local provision of waiver services to individuals with developmental disabilities. Regional directors report to state’s central developmental disabilities office, which provides oversight to the regions.
paragraphs: 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.
section_title: Appendix III: Comments from the Department of Health & Human Services
section_title: Appendix IV: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Acknowledgments
paragraphs: 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.