Comments on Proposed 2026 Medicaid Waiver Policies
Thank you for the opportunity to comment on the proposed changes to Virginia's Medicaid waiver programs. We appreciate the Department of Medical Assistance Services' efforts to maintain and strengthen Virginia's home- and community-based services system. At the same time, we urge DMAS to approach these changes with particular caution because even well-intended administrative changes can have significant consequences for people with complex disabilities and the families who support them.
Looking at the proposed changes as a whole, we see a great deal of significant change in a short period of time. This is all impacting families who are already handling far more than most, many of whom regularly share with us an overwhelming feeling of stress and dread, coupled with a lack of sleep. We always want families to be informed, heard, and supported. So many rapid changes may easily add to the feeling of struggle people with disabilities and their loved ones already carry too often.
We have significant concerns about the proposal for establishing a 56-hour-per-week “soft cap” on personal care/personal assistance services under the Community Living (CL) and Family and Individual Support (FIS) waivers.
The average waiver user needs more than 65 hours of care per week. More importantly, individuals receiving DD or CCC Plus waiver services have already demonstrated that their care needs are far beyond those of the average person. Eligibility for these waivers requires an individual to meet significant functional and/or medical criteria, including institutional-level care needs. For individuals who have waited for DD waiver services, finally receiving a waiver slot frequently occurs only after the individual and family have reached a state of ongoing crisis.
In other words, these are not individuals with ordinary or temporary care needs. Their need for assistance has already been established through multiple layers of eligibility and assessment. Virginia's DD waiver system exists in large part to enable people with significant disabilities to remain safely in their homes and communities rather than entering institutions.
The proposed 56-hour limit, if implemented with anything less than the utmost care and thoughtfulness, would therefore establish an additional barrier for people whose needs already clearly exceed those of the general population.
We recognize the importance of appropriate documentation and accountability. Authorization for more than 56 hours has historically required clear documentation of the individual's need and justification for the additional care. Any changes to this process should be undertaken with the utmost caution.
We urge DMAS to ensure that any exception process is simple, transparent, individualized, and accessible to families. It should never create an unnecessary hurdle or roadblock to obtaining the services necessary to keep a person with a disability safely at home. The process must include a review of other Waiver services (e.g., in-home care or community engagement) that can be used to supplement approved attendant care hours and meet the needs of the individual. Families should not have to navigate an increasingly complex administrative process simply to preserve services that have already been determined to be medically and functionally necessary.
At a minimum, DMAS should provide detailed information about the exception process, including what documentation will be required, who will make the determination, how quickly decisions will be made, alternative service plan options, and what protections will exist while an exception request is pending.
We have significant concerns about the proposal to add support brokers through the Fiscal/Employer Agent for the consumer-directed model and eliminate Services Facilitation.
This proposal would take effect on an extremely short timeline and would fundamentally change a system that has been in place for decades. Families need significantly more information, transparency, and opportunity for input before such a substantial restructuring occurs.
At present, we do not have sufficient clarity about the Request for Proposal, the criteria that will be used to select a broker or brokers, how many brokers will be available, how families will select among them, or what recourse families will have if a broker does not adequately meet their needs.
Consumer direction is built around individual choice and control. We are concerned that if only one broker is available, or if families have only limited options, the proposed system could undermine rather than strengthen consumer choice. Families should not be placed in a position where they have no meaningful alternative if they cannot obtain adequate support from their assigned broker.
We also have not seen a clear explanation of how this change will add value for families, improve service quality, reduce administrative burdens, or produce greater efficiency. DMAS should be able to demonstrate how the proposed system will improve outcomes for waiver users before replacing an established system.
We request substantially more clarification, stakeholder input, and implementation time before this change is made. Families and individuals who rely on consumer-directed services should have a meaningful opportunity to understand and shape a system that will directly affect how they manage their care.
We support efforts to provide greater flexibility in consumer-directed services, but we believe significant clarification is needed regarding the proposed changes to Employer of Record responsibilities and Employer Identification Numbers.
These changes could have important practical, tax, administrative, and legal implications for waiver users and the individuals assisting them.
We request clear, plain-language guidance for waiver users, families, designated representatives, and EORs explaining the implications of these roles and the best practices for using them. Families should not be expected to understand complicated employer and tax responsibilities without accessible guidance and support.
DMAS should clearly explain who is ultimately responsible for each function, what responsibilities may be delegated, what cannot be delegated, how liability is allocated, and what happens when an individual receiving services is unable to perform an EOR function.
We are also concerned about any changes involving the requirements for Legally Responsible Individuals (LRIs) who serve as paid aides or attendants.
We hear frequently from paid family caregivers about the immense challenges they already face in getting care approved, maintaining authorizations, documenting services, and navigating the Medicaid system. Any correction or clarification of existing requirements must not inadvertently create additional burdens for these families.
Every LRI who serves as a paid caregiver has already provided countless hours of unpaid care. These caregivers are filling a critical gap in a system facing a significant caregiver shortage. Their willingness to provide care is one of the reasons many Virginians with significant disabilities are able to remain safely at home.
We urge DMAS to make this process as smooth, clear, predictable, and consistent as possible. LRIs should not face greater administrative burdens simply because they are family members. Requirements should be communicated clearly, applied consistently, and designed to support rather than discourage family caregiving.
We have serious concerns about removing the requirement for a higher-level review by a DMAS nurse following a Level of Care Review (LOCERI) determination that an individual no longer meets criteria.
We are seeing significant reductions in care hours and understand firsthand how devastating an unexpected reduction or termination of services can be for a family. A higher-level review is one of the most important safeguards against errors in these determinations.
For families who depend on waiver services for essential daily care, an erroneous determination can cause immediate panic and disruption. The consequences are not merely administrative. A reduction or termination of authorized hours can mean that a family suddenly has to determine who will provide essential care, whether a parent must leave work, whether a spouse can continue working, or whether the individual can remain safely at home.
The higher-level review should be viewed as an important quality and accuracy safeguard, not simply as an administrative step that can be eliminated.
We urge DMAS to maintain this additional level of review and to ensure that families have meaningful protections against errors before essential services are reduced or terminated.
We have similar concerns regarding the proposal to update quality measures by removing managed care organizations as reviewers of service plans and references to higher-level reviews for LOCERI.
Regardless of how quality oversight is structured, the primary goal must be to ensure that people with disabilities receive the care hours they have been determined to need.
We are concerned that eliminating existing layers of review without demonstrating how equivalent protections will be maintained could increase the risk of errors and place additional burdens on waiver users and their families.
DMAS should prioritize strong safeguards for authorized care hours and should not move responsibility away from existing review processes unless it can clearly demonstrate that equivalent or stronger protections will remain in place.
Families should not have to carry the burden of correcting administrative errors after essential services have already been reduced or disrupted.
Although Electronic Visit Verification (EVV) is not the subject of these CMS application comments, we want to reiterate our grave concerns about the planned elimination of the live-in caregiver exemption.
We have maintained strong opposition to this proposal because live-in caregiving is fundamentally different from conventional shift-based care. These caregivers provide continuous, unpredictable support that is intertwined with daily family life.
Families have described situations involving seizures, choking, elopement, behavioral crises, toileting, medication needs, and other urgent circumstances in which the caregiver must immediately respond to the person they support. Requiring caregivers to interact with an electronic system during these circumstances can create an unnecessary conflict between documenting care and actually providing it.
Families are not asking to avoid accountability. They already document services and participate in oversight, and live-in caregivers frequently provide far more unpaid care than the hours for which they receive Medicaid reimbursement.
We strongly urge DMAS to delay implementation of EVV for live-in caregivers and to provide clear, accessible guidance to families before implementation proceeds. Families need to know exactly when EVV is required, when they should clock in and out, how the system should be used in circumstances where care is continuous or unpredictable, and how corrections should be made.
Most importantly, normal human error should never be used as grounds for terminating or preventing a live-in caregiver from providing authorized care when doing so would harm the Medicaid waiver recipient. A missed clock-in, incorrect entry, technical problem, or other reasonable documentation error should be handled through a clear correction process rather than becoming a basis for removing a caregiver or disrupting essential services.
Virginia's home and community-based services system depends heavily on family caregivers. These caregivers make it possible for people with significant disabilities to remain safely at home and avoid institutional placement. Policies affecting them should recognize the realities of live-in caregiving and should not introduce administrative requirements that interfere with the care itself.
We urge DMAS to delay the live-in EVV rollout, engage meaningfully with affected families, provide clear and practical guidance, and establish strong protections against adverse consequences resulting from ordinary human or technical errors.
Across all of these proposed changes, we ask DMAS to keep one principle at the center of its decision-making: Medicaid waiver services exist to support people with significant disabilities in living safely and successfully in their homes and communities.
These individuals and families have already demonstrated substantial levels of need. They should not have to overcome unnecessary administrative barriers to retain services that allow them to remain out of institutions.
We support appropriate accountability, documentation, quality assurance, and program integrity. But those goals must be balanced against the real-world consequences of additional requirements for families who are already providing extraordinary amounts of care.
We therefore urge DMAS to:
Preserve meaningful access to the hours of care that individuals have demonstrated they need;
Maintain safeguards against erroneous reductions or terminations of services;
Make exception and review processes simple, transparent, and family-friendly;
Provide substantially more information and stakeholder input before replacing established consumer-directed systems;
Ensure that consumer direction continues to provide meaningful choice;
Provide clear guidance regarding EOR responsibilities and LRI requirements;
Avoid creating additional administrative burdens for family caregivers; and
Delay implementation of EVV for live-in caregivers until the concerns of affected families have been fully addressed and appropriate protections are in place.
The success of Virginia's waiver system should ultimately be measured by whether people with disabilities can remain safely in their homes and communities with the support they need. Administrative changes should strengthen that goal, not inadvertently make it harder for families to achieve it.