HD43 - Virginia's Brain Injury Registry
House Joint Resolution 219 and Senate Joint Resolution 190 of the 2000 General Assembly Session, as introduced, "directed the Disability Commission to evaluate the current system for reporting brain injuries to the central registry, and the dissemination of information to survivors and their families concerning available assistance." These resolutions were not adopted by the General Assembly but were communicated via letter from the Speaker of the House of Delegates to the Joint Commission on Health Care (JCHC). (The Speaker's letter and the two resolutions are C1ttached as Appendix A.) The Speaker's letter indicates:
"The House Rules Committee believes that the issues addressed by the resolution merit review. Therefore the Commission is directed to undertake the study and to submit a written report of its findings and any recommendations to the Governor and to the 2001 Session of the General Assembly."
An amendment in the nature of a substitute for House Joint Resolution 219 was drafted but never formally adopted. The language contained in the substitute asked that JCHC address the following study questions:
• the procedures for reporting data to the Registry, including who is required to report and when;
• the comprehensiveness and accuracy of Registry data;
• the timeliness and usefulness of information that is disseminated to acquired brain injury survivors and their families;
• other registries maintained by the Department of Health that experience high reporting compliance follow-up services;
• whether revisions are needed to § 51.5-11 of the Code of Virginia to promote timely and complete reporting;
• whether existing exceptions to reporting requirements should be continued or revised;
• whether a system of sanctions should be enacted for non-compliance; and
• whether the Department of Rehabilitative Services continues to be the most appropriate agency location for the Virginia Brain Injury Central Registry.
Based on our research and analysis during this review, we concluded the following:
• Virginia was the first state to require reporting of head or brain injuries to a central registry.
• The Code of Virginia § 51.5-11 requires the Department of Rehabilitative Services (DRS) to maintain a brain injury registry. Hospitals and attending physicians are statutorily required to report within 30 days of identification of the injury those persons sustaining brain injury in which "permanent disability is likely to result."
• Reporting brain injuries to DRS is accomplished either by downloading patient information onto diskettes (the procedure used by five of the largest hospitals) or by completing and submitting one-page forms to DRS. The information DRS receives is entered into the brain injury registry and mailing labels are sent to the Brain Injury Association of Virginia (BIAV).
• DRS contracts with BIAV to provide outreach services to brain injury survivors and their families. Virginia's registry is a service-oriented rather than surveillance-oriented registry. The primary reason for the registry is to provide information to survivors and their families about brain injury symptoms and services. BIAV reported that from 1/1/99 through 2/29/00,114 of the 4,310 (or 2.6 percent) of their outreach cards resulted in a request for information.
• BIAV also has a contract with DRS to provide technical assistance to hospitals to improve compliance with reporting requirements and to assist DRS with its Open Registry Program. The Open Registry Program allows individuals to be added to the brain injury registry either through self-reporting or by being reported by a health care professional. Very few persons are reported to the Open Registry Program.
• Hospitals that provide emergency medical services are required to report to three trauma-related registries - the brain injury and spinal cord injury registries maintained by DRS and the trauma registry maintained by the Virginia Department of Health (VDH). For the last three years, DRS and VDH have worked to develop integrated reporting to one combined trauma registry. VDH indicates that there continue to be implementation issues that need to be addressed including funding and staffing to allow for project completion and to provide for ongoing registry support. The original estimated cost to implement the integrated system was $110,000. VDH has received appropriations of $470,000 to complete the system.
• In terms of the current operation of the brain injury registry by DRS, there are areas in which implementation is generally not consistent with statutory requirements. Most significantly, very few physicians report to the registry, hospitals often do not report brain injury patients who are released from their emergency rooms, and the average reporting time for hospitals exceeds 120 days. It should be noted however, Virginia's statutory requirements in these areas far exceed the reporting criteria required of brain injury registries in other states. Another significant operational concern is the low number of brain injuries that are reported as compared with estimates of the number of injuries that occur. Estimates indicate that 50 to 65 percent of the brain injuries that were serious enough to require hospitalization may not have been reported.
• While not a specific focus of the study, the availability of services for brain injury survivors is a critical issue. DRS estimates that about $2 million will be expended for services for brain injury survivors in FY 2001. Although some brain injury survivors will be served through the recently approved Medicaid waiver for the developmentally disabled, Virginia does not have a specific brain injury home/community based Medicaid waiver. Twenty-one states have such a waiver.
A number of policy options were offered for consideration by the Joint Commission on Health Care regarding the issues discussed in this report. These policy options are listed on pages 33-34.
Our review process on this topic included an initial staff briefing, which comprises the body of this report. This was followed by a public comment period during which time interested parties forwarded written comments to us regarding the report. The public comments (attached at Appendix B) provide additional insight into the various issues covered in this report.