March 29, 2023
Department of Medical Assistance Services
FROM: Teri Morgan
RE: Comment on Virginia’s Renewal Application for its §1915(c) Home- and Community-Based Waiver for Individuals with Developmental Disabilities—Family and Individual Supports Waiver
I am writing to provide comments on behalf of the Virginia Board for People with Disabilities (the Board) regarding Virginia’s Request for a Renewal to a §1915(c) Home and Community-Based Services Waiver: Family and Individual Supports (FIS). The Board appreciates the opportunity to provide input.
The inclusion of telehealth/virtual supports as a mode of service delivery is positive progress that keeps pace with innovation and modernization in service delivery. The Board was a member of the two workgroups convened to expand access to telehealth/virtual supports and appreciates the Department of Medical Assistance Services for its work with stakeholders, providers, and others to facilitate implementation of recommendations from these workgroups.
The policy change to allow legally responsible persons (LRPs) to provide personal assistance services recognizes the valuable role of family caregivers in keeping families together and stable, leading to better overall health and well-being of families and children. The Board has heard firsthand from many families about the negative impact the pandemic had on the workforce that provides critical services that support children with disabilities and spouses with disabilities to remain in their communities with the families who love them.
The Board has also heard that workforce issues, including unreliability, the ongoing need to provide training for new personal assistants, and a “revolving door” of people in and out of their homes, were challenges that were prevalent before the pandemic, and now are worse. The flexibility of allowing LRPs to be the paid caregiver through Appendix K was a much-needed lifeline for many families. The General Assembly recognized this in 2022 through Budget amendment item 304#4h.
The Board offers the following comments and recommendations to improve the renewal application for the FIS waiver, including specific comments and recommendations regarding the allowance of LRPs to be paid providers of personal assistance services, organized by application section.
Family and Individual Supports Waiver:
Brief Waiver Description
For example, the goal is to provide a system of services and supports that empowers individuals with developmental disabilities to live healthy, productive, integrated lives in the community of their choice. The objectives should be focused on achieving this goal, for example:
Appendix A: Waiver Administration and Operation
Number and percent of deficiencies identified during the state monitoring activities that were appropriately and timely remediated by the contracted entity. N: Number of deficiencies identified during the states monitoring activities that were appropriately and timely remediated by the contracted entity D: Total number of deficiencies identified during the states monitoring activities
The Quality Improvement strategy pertaining to administrative authority includes three performance measures. These performance measures cover all contracted entities, including DBHDS and the Fiscal/Employer Agent for fiscal management services for consumer-directed services as well as local/regional non-state public agencies that perform waiver operational and administrative functions, e.g., Community Services Boards. For the purpose of quality improvement, discovery, and remediation, adding a performance measure to monitor the identification and remediation of deficiencies would strengthen oversight of contracted entities.
Appendix B-3: Participant Access and Eligibility - Number of Individuals Served
The application states that the “Slots for facility downsizing are funded by the Virginia General Assembly according to the Commonwealth’s Settlement Agreement with the US Department of Justice.” While the Board understands that this explanation is technically accurate, in that the General Assembly ultimately determines the number of waiver slots available for individuals in the Commonwealth, this explanation does not discuss reserve slots for waiver movement and emergencies. Some discussion of historical rates of reserve slot usage would aid in determining whether the number of slots dedicated for this purpose in the future is appropriate and sufficient. Without this data, the reserve capacity contained in the application lacks sufficient context for meaningful evaluation.
Appendix B: Evaluation/Reevaluation of Level of Care - Quality Improvement: Level of Care
4.d. Level of Care Criteria: The Board recommends that the following statement be revised, “To ensure that Virginia’s home and community-based waiver programs serve only individuals who would otherwise be placed in an ICF/IID…” The eligibility requirement is that individuals meet the ICF/IID institutional level of care, thereby requiring an institutional level of care, not that they would otherwise be placed in an ICF/IID. It should therefore read “To ensure that Virginia’s home and community-based waiver programs serve only individuals who require an ICF/IID institutional level of care…”
In the Board’s 2022 Assessment of Access to Information for People with Disabilities and their Family Members, families report confusion about being asked if their family members will need to be placed in an institutional setting. There are opportunities to better communicate the Level of Care requirements in the waiver application and to family members. The current language is inconsistent with federal principles of person-centered, home and community-based systems of support. It is also incongruous that it is a key step in a process under a Department of Justice settlement agreement to promote community living outside of institutions. States such as Ohio, Pennsylvania and Maryland each require a clinician to document the need for an institutional level of care, but do not require families to explicitly state the need or eminent placement in an institutional setting.
5. B-8: Access to Services by Limited English Proficiency Persons: The Board recommends that this section be updated to reflect current information and practice.
For example, the link to the VDH webpage for the application for birth certificates to verify identity and citizenship as part of the application for Medicaid does not work (http://www.vdh.virginia.gov/vital Records/vtlapp.htm); the VDH link to training and services available to providers serving Medicaid applicants and participants does not work (http://www.vdh.virginia.gov/ohpp/CLASact/default.aspx); the link to the DBHDS policies referenced does not work (http://www.dbhds.virginia.gov/library/document-library/adm-sbpolicies1023.pdf).
DMAS has a comprehensive Language and Disability Access Plan and resources to ensure access, such as a Civil Rights Coordinator. Less clear is the sufficiency of language and disability access plans and implementation by DBHDS and CSBs. This section in the waiver application references the DBHDS Office of Cultural Competency and the support and technical assistance provided to CSBs. Information about this office could not be located online. There is a DBHDS webpage titled Cultural and Linguistic Competence. However, this webpage references a Statewide Cultural and Linguistic Competence Advisory Committee (CLCAC) that does not appear to be active. Even less known, is the compliance of CSBs with the State Behavioral Health and Developmental Services Board policies. Per the January 2019 CMS Instructions, Technical Guide and Review Criteria for Medicaid 1915 (c) waivers, the review criteria for this section state the following: “A variety of accommodations are described, both in conjunction with the waiver entrance process and for communicating with LEP persons on an ongoing basis (e.g., by providing for bilingual case managers). The content of this section should be strengthened to, at a minimum, meet the review criteria requirements and intent, including for DBHDS and CSBs. DBHDS and CSBs compliance with the requirement for language access is questionable.
Appendix C: Participant Services
6. Personal Assistance Services, Legally Responsible Person (LRP): The Board recommends adding a consumer-directed option for LRPs while retaining the proposed agency-directed option. The Board offers a number of recommendations with regard to LRPs which are divided below into two categories: agency-directed and consumer-directed.
The current standard for extraordinary care in the application is that the care provided would be “above and beyond what the legally responsible individual is obligated to provide”. This standard on its own is ambiguous. Development of criteria and/or examples of what would qualify as “extraordinary” care could help to clarify. This may include a definition of “ordinary” care such as this example language provided by CMS: “care that is the typical responsibility of a LRP ordinarily provided to individuals, with or without a disability.” Or this CMS explanation: “By extraordinary, CMS means care exceeding the range of activities that a legally responsible individual would ordinarily perform in the household on behalf of a person without a disability or chronic illness of the same age, and which are necessary to assure the health and welfare of the participant and avoid institutionalization.”
It appears not necessarily cost effective to make the change to agency-directed for LRPs. The cost to the Commonwealth for agency-directed personal assistance is approximately $6 per hour more than consumer-directed rates. In addition, many LRPs qualify for a tax exemption which results in currently no withholding for FICA. The FICA refunds the state receives through CD services would go away. The Board is concerned that the additional tax consequences of this change are not known and could add to the cost to the Commonwealth.
7. Consumer-Directed: The Board recommends that a consumer-directed option for LRPs to provide personal assistance services be included in the FIS waiver renewal application.
The Board worked with Applied Self Direction, experts in the area of self-directed, person-centered environments, to research current approaches in other states regarding LRPs being the paid support through consumer-directed services. We found that Delaware, Florida, Kansas, Kentucky, Louisiana, Maryland, New Mexico, Pennsylvania, Rhode Island, and West Virginia all report allowing LRPs to provide personal assistance through consumer direction. Here is an example of some of the language from Maryland's Family Supports Waiver (although their other DD waivers allow it as well):
The State makes payment to a legally responsible individual, who is appropriately qualified, for providing extraordinary care for the following services: Community Development Services or Personal Supports.
A legally responsible person may not be paid to provide these Waiver program services if it does not constitute extraordinary care as defined above.
2. CIRCUMSTANCES WHEN PAYMENT MAY BE MADE
Participant enrolled in the Self-Directed Services Delivery Model (as provided in Appendix E) or Traditional Service Delivery Model may use their legally responsible person to provide services in the following circumstances, as documented in the participant’s Person-Centered Plan (PCP):
1. The proposed provider is the choice of the participant, which is supported by the team;
2. There is a lack of qualified providers to meet the participants needs;
3. When a relative or spouse is not also serving as the participant’s Support Broker or designated representative directing services on behalf of the participant;
4. The legally responsible person provides no more than 40-hours per week of the service that the DDA approves the legally responsible person to provide; and
5. The legally responsible person has the unique ability to meet the needs of the participant (e.g. has special skills or training, like nursing license).
The CMS Guide: Instructions, Technical Guide and Review Criteria for 1915(c) HCBS Waivers, is a tool to aid states in designing their waivers. This Guide states that “…providing payments to legally responsible individuals is a state option, not a federal requirement.” It does not exclude LRPs from providing personal assistance services through consumer direction.
The Board recognizes that there must be explicit rules and safeguards in place in order for LRPs to be the paid provider. For example, CMS requires the state to distinguish extraordinary care from ordinary care, include limitations on the amount of service for which payment can be made, and ensure that the provision of services by a LRP is in the best interest of the individual, as well as satisfy some additional protections. The recommendations below pertain to these requirements:
The current standard for extraordinary care in the application is that the care provided would be “above and beyond what the legally responsible individual is obligated to provide”. This standard on its own is ambiguous. Development of criteria and/or examples of what would qualify as “extraordinary” care could help to clarify. This may include a definition of “ordinary” care such as this example language provided by CMS: “care that is the typical responsibility of a LRP ordinarily provided to individuals, with or without a disability.” Or this description by CMS: “By extraordinary, CMS means care exceeding the range of activities that a legally responsible individual would ordinarily perform in the household on behalf of a person without a disability or chronic illness of the same age, and which are necessary to assure the health and welfare of the participant and avoid institutionalization.”
DMAS regulations (12VAC30-122-120) currently require “objective, written documentation" for an adult to receive services from a family member living under the same roof. Similar documentation should be required for the following: 1) Objective written documentation for a LRP to be the paid provider for their minor child. This requirement would be consistent with the CMS extraordinary circumstance rules. 2) For some adults with disabilities, continued care from a parent or other loved one is their preferred option, but others may find it limiting and prefer a situation that would allow them more independence and autonomy. When a minor turns 18 years of age, objective written documentation must ensure that the person with a disability turning 18 is informed of all their options and freely chooses the person who is the paid provider. 3) The requirement for an adult to receive services from a family member living under the same roof is currently in place and should remain.
8. Personal Assistance Services: In addition to the above regarding Personal Assistance Services:
The delegation of nursing tasks and procedures is an option for people receiving personal assistance services under specific circumstances. Nurse delegation allows for greater autonomy and control by the individual receiving services and should be included in the service definition.
The services definition includes the following statement: Individuals choosing to receive services through the consumer-directed model may do so by choosing a services facilitator to provide the training and guidance needed to be an employer. It should be clarified that an individual can choose CD services and choose not to receive services facilitation. The option for a case manager, or another person of the individual’s choosing, to serve in this role should be included in the waiver application.
The delegation of nursing tasks and procedures is an option for people receiving CD personal assistance services under specific circumstances. Nurse delegation allows for greater autonomy and control by the individual receiving services and should be included here.