RD816 - HB888/SB176 2024 Workgroup on Placements for People with Neurocognitive Disorders and Neurodevelopmental Disabilities – November 22, 2024
Executive Summary: In December 2023, the Joint Legislative Audit and Review Commission (JLARC) reported on Virginia’s State Psychiatric Hospitals.(*1) JLARC found that individuals with a primary diagnosis of neurocognitive disorders and neurodevelopmental disabilities accounted for 10 percent of state psychiatric hospital discharges in FY 2023. It should be noted that this total only accounts for primary diagnosis, and some of the individuals included had co-occurring mental health diagnoses. JLARC found that individuals with neurocognitive and/or neurodevelopmental disorders had longer lengths of stay in state psychiatric facilities. Staff reported they lacked expertise to care for these patients and were at higher risk of victimization. The first four recommendations in the JLARC report address these findings. HB 888 (Watts) and SB 176 (Favola) were passed during the 2024 General Assembly Session in response to the JLARC findings. Chapters 579 and 696 of the 2024 Virginia Acts of Assembly respond to the recommendations of the JLARC report. These amendments are subject to reenactment by the General Assembly during the 2025 Session. In addition to other changes, the amendments would specify that for the purpose of civil commitments and temporary detention orders (TDOs), behaviors and symptoms that manifest from a neurocognitive disorder or neurodevelopmental disability are excluded from the definition of mental illness and are, therefore, not a basis for an individual to be placed under a TDO or committed involuntarily to an inpatient psychiatric hospital. In addition, Chapters 579 and 696 direct the Secretary of Health and Human Resources to convene a workgroup to evaluate availability of current placements for individuals with neurocognitive disorders and neurodevelopmental disabilities who would otherwise be placed in state psychiatric hospitals, identify and develop alternative placements and services, specify funding or statutory changes needed to prevent inappropriate placements, and provide recommendations for training related to implementation of the language subject to reenactment. Overview of Activities of the HB888/SB176 2024 Workgroup on Placements for People with Neurocognitive Disorders and Neurodevelopmental Disabilities The charge for the workgroup was broad, covering service for individuals with mental illness, brain injury, dementia, autism and other developmental disabilities. There are many specialty populations included under these populations. Their care needs vary significantly and are often medically complex and unique to the individual. The workgroup met five times from August to October of 2024. Workgroup membership extended far beyond those required in the legislation to ensure the expertise and perspectives were present to deliver impactful recommendations. In addition to executive and legislative membership, the workgroup included family members, law enforcement, advocates, providers and other experts in the fields of behavioral health, brain injury, dementia and developmental disabilities including autism. Membership included representatives from the following agencies and organizations: • The Office of the Secretary of Health and Human Resources The workgroup received presentations from a wide array of stakeholders. Family members and caregivers of individuals with neurodevelopmental and neurocognitive disorders shared their lived experiences through presentations and participation in public comment. Advocacy organizations including The Arc of Virginia, The Virginia Autism Project, and the Virginia Alzheimer’s Association also presented. Public and private provider associations provided presentations including the Virginia Association of Community Services Boards, Virginia League of Social Service Executives, Community Brain Injury Services, Virginia Hospital and Healthcare Association, Virginia Healthcare Association, and Virginia Assisted Living Association. The Kennedy Krieger Institute, the Faison Center, and NeuroRestorative gave individual provider perspectives. State agencies including the Department of Behavioral Health and Developmental Services (DBHDS), Department of Aging and Rehabilitative Services (DARS), and Department of Medical Assistance Services (DMAS), and Office of the Executive Secretary (OES) Department of Magistrate services also provided presentations. Please see the Appendices for the workgroup membership list, information submitted by stakeholder organizations, meeting minutes, and presentation materials. Definition of Neurocognitive and Neurodevelopmental Disorders The Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) of the American Psychiatric Association defines diagnostic criteria for neurodevelopmental and neurocognitive disorders. Neurocognitive disorders are characterized by a decline from a previously attained level of cognitive functioning. Mild and major neurocognitive disorders have various causes including Alzheimer disease, cerebrovascular disease, Lewy body disease, frontotemporal degeneration, traumatic brain injury, infections, and alcohol abuse. Major neurocognitive disorder is characterized by dementia. Mild neurocognitive disorder includes some level of memory impairment and decline in ability to perform everyday activities, although individuals are still able to perform these activities without assistance, and difficulties with language, perceptualmotor and social skills. These impairments are more significant than age related changes experienced by the neurotypical population. Mood disturbances, including sudden increases in depression, bipolar-like mood swings or disinhibition, agitation, anxiety, or a sudden onset of apathy or dysthymia are often early indicators of the cognitive decline. Certain psychiatric disorders are also associated with an increased risk of dementia.(*2)(*3)(*4)(*5) Neurodevelopmental disorders are a group of conditions with onset in the developmental period, often before a child enters grade school, characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning. The DSM-5 includes the following within its definition of neurodevelopmental disorders: • Intellectual Disability In Virginia, 40 percent (females)/60 percent (males) of individuals with a developmental disorder (DD) have a mental health condition and/or behavioral support needs and approximately 50 percent of all individuals with DD are on at least one psychiatric medication for a mental health condition.(*6) Review of Virginia Initiatives to support individuals with Neurodevelopmental Disabilities and Neurocognitive Disorders and Behavioral Challenges Department of Justice Settlement Agreement Section III.C.6.a.i-iii of the 2012 Department of Justice (DOJ) Settlement Agreement with the Commonwealth requires Virginia to implement a statewide crisis system for individuals with intellectual and developmental disabilities. Under this system the Commonwealth must provide timely and accessible support to individuals in crisis, crisis prevention services and planning, and in-home and community-based crisis services to prevent removal from current placement whenever practicable. There are 22 compliance indicators focused on crisis prevention including crisis assessments in the community, behavioral services, direct service provider availability, and psychiatric hospital admissions/discharges. There are seven compliance indicators related to mobile crisis and another seven focused on crisis stabilization including community therapeutic home availability, out of home prevention, and residential services. The Commonwealth of Virginia DOJ Settlement Agreement Library may be referenced for more information on settlement agreement requirements, compliance indicators, and reporting.(*7) General Assembly Workgroups and Reports In 2021, the General Assembly directed the Secretary of Health and Human Resources to convene a workgroup to make recommendations for enhanced services for individuals with dementia to reduce preventable hospitalizations.(*8) The General Assembly also directed DBHDS to report on the state hospital discharge process which included analysis and recommendations for supporting special populations.(*9) With the support of the General Assembly, DBHDS began implementing programs consistent with the recommendations of the reports. Current programs include Wytheville (Carrington Memory Care Partnership and Mt. Rogers Wythe House), Suffolk (Western Tidewater Dementia Programs), Waverly and Chilhowie (Nursing Home Partnerships), and Northern Virginia (RAFT Dementia Support Program). DBHDS reported on the implementation of these programs in quarterly reports(*10) and an annual report submitted to the General Assembly in June 2022.(*11) While these programs are ongoing, due in part to the li, they have only been able to serve a small proportion of the individuals with dementia who are referred for admission to state hospitals. Please see the Appendix for an overview of Temporary Detention Order and Involuntary Admission process and Programs Supporting People with Neurodevelopmental Disabilities and Neurocognitive Disorders Experiencing Behavioral Health Challenges. In 2022, the General Assembly directed the Department of Medical Assistance Services (DMAS) to convene a workgroup to develop a plan for a neurobehavioral science unit and a waiver program for individuals with brain injury and neurocognitive disorders.(*12) A summary of the work and final proposals of the Brain Injury Services Steering Committee was presented at their last meeting in May of 2023.(*13) Findings from the associated rate study for the proposed continuum of services for individuals with brain injury and neurocognitive disorders included targeted case management under the state plan, 1915 (c) Home and Community Based Services waiver, and Neurobehavioral Treatment Facility was presented in July of 2023.(*14) Of the services proposed, only Targeted Case Management for individuals with Traumatic Brain Injury was implemented in Virginia Medicaid in 2024. Please see the DMAS Overview presentation in the Appendix for additional information. During the 2024 General Assembly Session, bills were introduced but did not pass that would have directed DMAS to seek the appropriate authority to add neurobehavioral and neurorehabilitation facilities as an alternative institutional placement for individuals requiring traumatic brain injury treatment. The bills would have also directed DMAS to seek authority to modify the existing 1915 (c) waiver or create a new waiver to administer home and community-based services for qualifying individuals with traumatic brain injury and neurocognitive disorders.(*15)(*16) Key Findings Through staff research, valuable presentations, and extensive stakeholder perspectives, the workgroup made key overarching findings that helped guide its recommendations. These findings include: • The workgroup expressed concerns about unintended consequences resulting from changing the definition of mental illness as required in HB888/SB176. The workgroup commends the patrons for efforts to address inappropriate placement of individuals with neurocognitive and neurodevelopmental disabilities in state psychiatric hospitals. Unfortunately, state hospitals may be the only option for some individuals when in crisis. Although state hospitals are not suitable for those whose behavioral health crisis stems from a neurocognitive disorder or neurodevelopmental disability, the alternatives outside of state hospitals are limited for these populations. • Data from Virginia’s DD Waiver population indicated that almost 70 percent of individuals with ID/DD have a co-occurring behavioral health condition that requires specialized behavioral health treatment. • Individuals with neurodevelopmental disabilities and neurocognitive disorders with behavioral health challenges lack adequate access to long-term care and support services and crisis services with the training and expertise to support them remaining in their current placement. When in-patient care is needed, individuals in these populations generally lack access to services and clinicians with the specialization required to meet their needs. • The current workforce does not have the necessary expertise to effectively support these individuals. By strengthening the skills and capabilities of existing staff, we can significantly increase the number of placements equipped to care for them at all levels of the care continuum. • Communication barriers, especially during a behavioral health crisis, can result in individuals with neurodevelopmental disabilities or neurocognitive disorders being inappropriately placed or kept longer than necessary in state hospitals or other facilities such as jails. Providing adaptive communication support is essential to ensure they receive appropriate care and placement. • Caregivers play a critical role in supporting individuals in the least restrictive settings, advocating for their needs, and preventing unnecessary placements in state facilities. To continue fulfilling this vital role, caregivers and legal decision-makers must receive comprehensive information and resources so they can effectively support the individual’s behavioral health crisis. Strengthening this support network is essential to ensuring the best outcomes for those they serve. • Training certified prescreeners and magistrates alone cannot ensure the successful implementation of HB888/SB176. The clinical complexity of determining whether an individual's behavior stems from a neurodevelopmental disability, a neurocognitive disorder, or a mental illness goes beyond what training can address—especially given the current qualifications required for prescreeners and the strict timeline for completing Temporary Detention Order (TDO) evaluations during the Emergency Custody Order (ECO) period. Additionally, without immediate access to appropriate services that meet the unique needs of this population, no amount of training will fill this critical gap. Recommendations Critical Issues and Gaps Must be Addressed Individuals whose behaviors are a sole manifestation of a neurodevelopmental disability or neurocognitive disorder may still be a significant danger to self and/or others and require high intensity behavioral health services including in-patient care. Individuals within this population are placed in state facilities as a last resort to maintain their safety and the safety of their caregivers when it is determined that no alternative safe placement is available. Nearly all private inpatient facilities in the state have neurodevelopmental disability and neurocognitive disorder as an exclusionary criteria for admission. Because of these criteria, individuals with these conditions cannot receive care in private inpatient facilities notwithstanding a diagnosed cooccurring mental illness, further causing negative impact to the individual and caregiver seeking behavioral health support. Recommendation 1: The workgroup commends the patrons of HB 888/SB176 for introducing legislation to address the inappropriate placement of individuals with neurocognitive and neurodevelopmental disabilities in state psychiatric hospitals. The workgroup agrees that state psychiatric hospitals are not suitable for individuals whose behavioral health crisis stems from their neurocognitive disorder or neurodevelopmental disability, rather than a mental illness. A broader continuum of care, including more community-based options, is needed. However, there are limited alternatives outside of state hospitals for individuals with neurocognitive or neurodevelopmental disabilities in crisis. If the door to state psychiatric facilities is closed to individuals with neurocognitive or neurodevelopmental disabilities, there may be no other options for individuals in crisis and their families. State hospital placement is their last option. Therefore, the workgroup recommends that HB888/SB176 not be reenacted at this time. The recommendations contained in this report are steps towards improving existing services and developing new services which could help divert individuals from state psychiatric hospital placement. Until these types of services better cover Virginia, the workgroup finds re-enacting this legislation would likely not have the desired effect for several reasons: • Changing the statutory definition of mental illness would require certified prescreeners and magistrates to determine whether an individual’s behaviors are the sole manifestation of a neurodevelopmental disability or neurocognitive disorder during the ECO and TDO process. • TDO evaluations must occur within the eight-hour ECO period. The purpose of the TDO evaluation is to determine if an individual meets Virginia’s code requirements for involuntary civil commitment, not to conduct a comprehensive behavioral health diagnostic assessment. Further, prescreeners are not required to be licensed clinicians and cannot make complex diagnostic decisions during a crisis evaluation. • Many individuals who are evaluated are not previously known to the CSB prescreener evaluating them, and medical and psychiatric information is not accessible at the time of evaluation. Even if that history is accessible, individuals with underlying neurodevelopmental disabilities or neurocognitive disorders may not yet have a formal diagnosis. • Some individuals with neurodevelopmental disabilities and neurocognitive disorders with behavioral challenges may have co-occurring mental illnesses that have not been formally diagnosed. It may not be possible to determine during the short ECO period whether their behaviors are a sole manifestation of these conditions. Making this determination is complex and time intensive and requires comparing their behaviors to their unique baseline. Build a Sustainable and Comprehensive Continuum of Care The workgroup identified need to increase access to services for individuals with neurodevelopmental disabilities and neurocognitive disorders experiencing behavioral challenges that would prevent or provide alternative treatment locations to state facilities. Such services include specialized high-intensity behavioral health services for individuals needing a higher level of care, crisis services, and specialized services and supports in long-term care and support services. Recommendation 2: Support planning and implementation of an applicable Medicaid waiver to build a continuum of home and community-based services, from crisis to long term supports, and increase access to brain injury and other neurocognitive services. Coverage for inpatient and residential neurobehavioral treatment should be considered for inclusion as part of this plan. This recommendation focuses on next steps for building out additional needed services identified by the 2022 DMAS Report on Planning for the Development of Services for Individuals with Brain Injuries and Neurocognitive Disorders(*17), 2023 Brain Injury Services Steering Committee(*18), and 2023 Brain Injury Services Rate Study(*19), of which only Targeted Case Management for individuals with Traumatic Brain Injury was implemented in Virginia Medicaid in 2024. Recommendation 3: Expand and build on successful DBHDS programs funded and implemented as the result of the 2021 Dementia Services Workgroup Report(*20) and the 2022 DBHDS Report on State Hospital Discharge Process(*21). Current programs include Wytheville (Carrington Memory Care Partnership and Mt. Rogers Wythe House), Suffolk (Western Tidewater Dementia Programs), Waverly and Chilhowie (Nursing Home Partnerships), and Northern Virginia (RAFT Dementia Support Program). Please see the 2022 DBHDS Report on the Development of Programs for Individuals with Dementia Served by State Hospitals(*22), and the 2021-2022 DBHDS Quarterly Reports(*23) on the Establishment of Census Pilot Projects on RGA LIS for more information. • Explore options for developing evidence-based practices (EBPs) within existing programs and services for people with neurodevelopmental disabilities or neurocognitive disorders and co-occurring behavioral challenges (e.g., adapted cognitive behavioral therapy for individuals with neurodevelopmental disabilities). Ensure funding, including Medicaid rates, can support enhanced staffing to implement new EBPs. • Strengthen administrative capacity needed to support regional coordination of state and local government partnerships with private providers to support individuals with neurocognitive disorders in integrated care models. Also, develop a plan to determine the best regional or otherwise targeted approaches that address service demand and availability and supports efficient use of state and local public resources to expand the capability and capacity of private providers to serve individuals with neurocognitive and neurodevelopmental disorders in the least restrictive setting possible. This comprehensive plan should also address funding (both startup and operational) and training needs, as discussed in other recommendations. Recommendation 4: Utilize Pilot Private Hospital discharge funds to support individuals with neurocognitive disorders after an inpatient discharge. These pilot funds are intended to be used to support one-time costs, such as transportation and apartment setup(*24). Traditional discharge assistance program (DAP) funds are primarily used to support the discharge of patients from state facilities and are allocated as such in the DBHDS grants to localities budget language. Item 296 P.2. of the FY 2025-FY 2026 budget authorized a pilot program to support the discharge of private hospital patients at risk of transfer to state mental health hospitals using a portion of allocated DAP funds. This budget language required DBHDS to prioritize assistance to patients who can be diverted from state hospital admission through discharge training, planning consultation, and/or one-time financial assistance. This recommendation would expand the current pilot to use these funds to assist with finding appropriate housing and support for individuals with neurocognitive disorders after discharge from inpatient hospitalization. Enhancements to Crisis Services Recommendation 5: Identify the resources and training needed for supporting and expanding the capacity of REACH. Conduct a root cause analysis involving individuals, families, support coordinators, and other stakeholders. This analysis should aim to determine the challenges faced by individuals with neurodevelopmental disabilities in accessing supports and services and how to improve and standardize these services across the state including review and revise protocols for stakeholder roles and responsibilities for providing diversion services, as well as identify new models of care that can supplement or complement REACH. Please see the Crisis System page on the DOJ Settlement Agreement Library for more information on the current performance of the REACH program.(*25) Recommendation 6: Ensure that Crisis Receiving Centers (CRCs) and Residential Crisis Stabilization Units (RCSUs) build capacity and competency to support the needs of individuals with neurodevelopmental disabilities or neurocognitive disorders and behavioral health challenges (e.g., sensory rooms, designated space for caregivers to stay with the individual receiving services, protocols for funding and implementing increased staffing ratios when needed). Please see the Goal 6 of the DBHDS Strategic Plan Dashboard for more information on the current Virginia Crisis Connect build out.(*26) Enhancements to Existing Community Inpatient Settings Recommendation 7: Ensure an adequate number of private inpatient facilities in the Commonwealth that can support short-term admission of individuals with neurodevelopmental disabilities or neurocognitive disorders and behavioral challenges when inpatient care is clinically indicated. This includes identifying areas to support and addressing barriers such as opening specialty units, payment sources and rates to support increased staffing, guidance on when admission of individuals is permissible under licensing, creating sensory rooms, and identifying space for caregivers to stay with individuals receiving services. Recommendation 8: Build capacity for providers to readmit individuals they had referred to crisis services after the crisis subsided. This includes supporting and building capacity among community providers through training programs and guidance to readmit individuals they had referred to crisis services after they have been stabilized through expansion of integrated behavioral health services. This recommendation would also include reviewing DBHDS, DSS, and VDH regulations to determine if changes can be made to encourage facilities to readmit individuals who were referred to crisis services once they have been stabilized. Recommendation 9: Develop a plan to establish a best-in-class treatment and rehabilitation center in Virginia for individuals with neurodevelopmental disabilities, that includes a high intensity behavioral health services specialty care unit, outpatient, and crisis services. Such a center may also include community consultative services, workforce training, and caregiver education and support, through academic and other community partnership and collaboration. This recommendation is informed by the workgroup’s review of neurobehavioral programs at the Kennedy Krieger Institute, a world class center for treatment of children with neurodevelopmental disabilities associated with Johns Hopkins University. Communication and Information Sharing The workgroup recognized the critical need for effective communication among service providers supporting individuals throughout the continuum of care. Addressing communication barriers also enhances care coordination, enabling smoother transitions for individuals. This improved exchange of information will help prevent inappropriate placements or extended stays in state psychiatric facilities, ultimately leading to better outcomes for those receiving care. The following proposals were discussed to address this issue: • Continue to support the expansion of the adoption of the emergency department care coordination (EDCC) system with the CSBs and state psychiatric hospitals as provided for in the EDCC plan and DBHDS IT plan. • Individuals who have established services with a CSB should be ensured coordinated discharge planning to prevent re-admission to crisis and inpatient services. Private hospitals should be required to notify the individual’s local CSB 24 hours prior to discharge from an inpatient setting, if the individual has already established services at the CSB or if the private hospital is referring the individual to the CSB to establish new services, to improve care coordination and transition between services. Recommendation 10: Review and enhance requirements for policies and procedures for involvement of family/caregivers throughout the crisis response and intervention process. This should support participation during the ECO/TDO process, referral to alternative levels of care such as crisis services or other community-based services, and discharge planning from inpatient settings. Develop and distribute plain language educational materials to individuals and their supporters on how the crisis response and intervention process works and what their rights are during the process. This recommendation builds off the changes made by Otieno’s Law passed during the 2024 legislative session. Recommendation 11: Develop a best practice protocol that defines stakeholder roles and responsibilities for providing diversion services to individuals with neurocognitive disorders with behavioral challenges who present in the emergency department. In addition, DBHDS should develop strategies to communicate efforts to improve REACH activities, capacity, capabilities, and coverage as referenced in Recommendation 4. Please see the Crisis System page on the DOJ Settlement Agreement Library for details on the performance of the REACH program.(*27) Build Workforce Capacity and Competency The workgroup discussed that the existing workforce lacked capacity and expertise to adequately support individuals with neurodevelopmental disabilities and neurocognitive disorders with behavioral health challenges and co-occurring conditions. Enhancing the capability of the existing workforce to care for these individuals will expand the availability of placements capable and willing to care for these individuals. The following proposals were discussed to address this issue: Training Recommendation 12: Implement comprehensive training programs for staff at state facilities and work with Virginia Hospital and Healthcare Association (VHHA) to support private hospitals to develop and demonstrate competency in supporting individuals with neurodevelopmental disabilities and neurocognitive disorders. This training should equip healthcare professionals with the knowledge and skills necessary to provide effective, compassionate care tailored to the unique needs of these individuals. Consider further incentives such as enhanced payments for specialty training or certifications for professionals specializing in serving individuals with neurodevelopmental disabilities or neurocognitive disorders. Recommendation 13: Create and implement a training curriculum for Mobile Crisis, Crisis Receiving Center (CRC), Residential Crisis Stabilization Unit (RCSU) providers, and 988 call center staff on serving patients with co-occurring neurodevelopmental disabilities and/or neurocognitive disorders with challenging behaviors. Recommendation 14: Identify funding resources to support providers to offer training to direct care staff, including residential/institutional facilities and HCBS providers, on best practices for supporting individuals with neurodevelopmental disabilities or neurocognitive disorders and cooccurring behavioral health challenges across the continuum of care. Support Caregivers The workgroup listened to numerous caregivers who shared their traumatic experiences due to challenges accessing needed services for individuals with neurodevelopmental disabilities and neurocognitive disorders facing behavioral health challenges. Caregivers play a vital role in helping these individuals remain in the least restrictive settings, advocating for their needs, and preventing unnecessary placements in state facilities. Providing caregivers with the support they need is essential for improving outcomes for both them and the individuals they care for. The following proposals were discussed to address this issue: Recommendation 15: Identify appropriate funding mechanisms to support expanding access to respite care providers trained to support individuals with complex care needs. Recommendation 16: Review and strengthen requirements for policies and procedures for ensuring that family members and caregivers are provided with multiple means for visitation (including in person, video, and telephonic) to ensure they are permitted appropriate access to communicate with individuals receiving care and support them in advocating for their needs across service settings. Identify and implement communication strategies to support stakeholder awareness of visitation rights. This recommendation builds from the changes made by Otieno’s Law passed during the 2024 legislative session. Recommendation 17: Identify and implement strategies to simplify the process for creating psychiatric advanced directives, develop infrastructure to support provider access to advanced directives, and educate stakeholders on how to create, access, and implement advanced directives. Psychiatric advance directives can be beneficial by providing clear instructions and preferences for care during a behavioral health crisis when caregivers are not immediately available. This tool can empower caregivers and dependent individuals by outlining treatment options and support preferences and ensuring that their voices are heard. Identify and implement strategies to support access to voluntary services for individuals with a psychiatric advance directive or with a consenting legal guardian or medical power of attorney. (*1) https://bhc.virginia.gov/documents/Revised%20Presentation%20-%20JLARC%20psych%20hospital%20study.pdf |
Menu
Published Documents
