All States Whose Officials We Interviewed Include Death as a Critical Incident

All 14 states whose officials we interviewed included death among  individuals with developmental disabilities as a critical incident in their  waiver programs. 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. Six Basic Mortality Review Components Identified as Important by Experts Are Used by Most States Whose Officials We Interviewed

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. The woman died of pancreatitis while living in a community  group home and receiving Medicaid HCBS waiver services. This region increased its educational  outreach to families on the topic of choking prevention. Combined, 13 of 50 states did not  aggregate mortality data, and 37 did. Officials in Several States in Which We Conducted Interviews Believed Mortality Reviews Reduce Risk of Death and Improve Quality of Care

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. 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. 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. Combined, 24 of 50 states  reported having a state-level review committee, and 26 did not. 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. Mortality Reviews Result in Statewide Actions to Address Similar Care Concerns and to Help Prevent Deaths in Most of the 14 States

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. 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. 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.
Why GAO Did This Study

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.

What GAO Found

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.