The Department of Behavioral Health and Developmental Services (DBHDS) worked in partnership with the Virginia Department of Health (VDH) Office of the Chief Medical Examiner (OCME) to identify stakeholders in the mortality investigations process within the I/DD system and organize meetings of the House Bill 659 (Chapter 568) Workgroup on Mortality Investigations and Prevention. Work group members included representatives from DBHDS, OCME, the disAbility Law Center of Virginia (dLCV), the Department of Criminal Justice Services (DCJS), the Office of the State Inspector General (OSIG), and various advocacy organizations (see Appendix A).

The Developmental Disabilities Mortality Review Committee (MRC) was established in 2012 as part of Virginia’s Settlement Agreement with the United States Department of Justice. The Settlement Agreement required DBHDS to move individuals previously in the state’s training centers into integrated community settings. The MRC was established to examine these system changes and their impact on preventable mortality. Since that time, the Committee has engaged in system of care improvements through integration of clinical evidence, data-driven determinations, and evidenced based quality improvement recommendations. The scope of the committee reviews deaths of all individuals who were receiving a service licensed by DBHDS at the time of death and diagnosed with an intellectual disability and/or developmental disability (I/DD). Analysis of the mortality trends, patterns, and problems can identify opportunities for system improvements to reduce risks to all individuals with developmental disabilities receiving behavioral health and/or developmental services. DBHDS seeks to prevent instances of abuse, neglect, exploitation, and unexplained or unexpected death by identifying and addressing relevant factors during mortality reviews. Mortality review determinations are utilized to develop quality improvement initiatives in order to reduce mortality rates to the fullest extent practicable.

As individuals with developmental disabilities (DD) have transitioned to more integrated, community environments, a new system of care has been developed to meet their needs. Following the DOJ Settlement Agreement, one key change in this transition from residing and ultimately passing away while in the care of a state operated facility, was that involvement of the Office of the Chief Medical Examiner (OCME) was no longer mandated for each death of a DD individual in the community. The OCME provides invaluable information and investigation related to understanding the causes and manner by which people die, but it is not practical or necessary for every person who dies to receive this level of investigation. The workgroup aimed to explore the opportunities to enhance the work of the MRC and the OCME, to ensure that the Commonwealth continues to advocate and understand the complex circumstances under which individuals with developmental disabilities may live and die, and utilize that knowledge to improve the overall system of care.

Two meetings of the work group were held on June 30, 2022 and August 2, 2022, as posted to Commonwealth Calendar, with broad discussion centered on the following themes:

• Improved quality assurance to ensure that the individuals that fall under the current scope of the MRC are being appropriately identified and investigated.
• Increased need for initial and ongoing training related to identifying and reporting deaths to law enforcement and the OCME.
• Increasing access and resources for medical autopsies for families who wish to pursue additional investigation into a person’s death.
• Expanding the scope of mortality review to other state operated institutional settings where individuals with DD reside.
• Ensuring appropriate financial resources are provided to support enhancements in technological infrastructure for data collection. There is a need for additional resources to support the current work of the MRC and OCME to meet established requirements for mortality review given the limited availability of forensic pathologists to meet the demand.