I strongly urge DMAS to reconsider several of these proposed changes. As both someone familiar with Virginia’s consumer-directed system and a parent of children who receive waiver services, I am deeply concerned that several of these amendments could create additional barriers for individuals and families rather than improving the system.
Services Facilitation is not the problem with consumer-directed services. I strongly oppose eliminating Services Facilitation as a standalone service and incorporating these responsibilities into the statewide Fiscal/Employer Agent model. Services Facilitators provide an important level of direct support, education, monitoring, advocacy, and accountability to individuals and families using consumer-directed services.
The Fiscal/Employer Agent already has significant responsibilities related to enrollment, payroll, attendant processing, EOR changes, and other administrative functions. Families routinely experience difficulty resolving problems within those existing responsibilities. Adding the responsibilities currently performed by Services Facilitators to that system raises serious concerns about capacity, responsiveness, and accountability.
My own family experienced this firsthand. An EOR change for my children took nearly nine months to be processed correctly and ultimately required leadership intervention through CDCN. That experience does not give me confidence that transferring significantly more responsibility to the Fiscal/Employer Agent will improve consumer-directed services.
Before expanding the role of the F/EA, DMAS should evaluate whether the existing Fiscal/Employer Agent system can consistently and timely perform the responsibilities it already has.
Services Facilitators also provide something that a centralized administrative entity cannot easily replace: knowledge of the individual, the household, the attendants, and how the consumer-directed model is actually functioning in the home. My own experience with the level-of-care review process demonstrates why families need knowledgeable support and meaningful safeguards.
Last year, the LOCERI process for my children was not completed appropriately. The assigned reviewer failed to complete the required review after three scheduled attempts. Despite those no-shows, the situation was documented as though my family had been unreachable, and a waiver termination notice was ultimately issued.
The organization involved did not even appear to have awareness that I had been no-showed multiple times by the reviewer before that termination notice was generated.
Had I not understood that something was wrong, escalated the situation to DMAS, and fought the waiver termination, my children could have lost their waiver services through no fault of their own.
Once the review was finally completed, both of my children were found to continue to qualify and remained eligible for waiver services. That is an enormous systems failure.
A family should never receive a waiver termination notice because a required reviewer repeatedly failed to appear and the system then attributed that failure to the family. When something of this magnitude can occur, the answer should be to strengthen oversight, accountability, and support for families—not remove layers of review or eliminate the professionals helping families navigate the system. And importantly, none of this had anything to do with my Services Facilitator failing to do their job.
My Services Facilitator reminded me that the level-of-care review was due, followed up with me to make sure it had occurred, recognized that there was a problem, and helped guide me toward the appropriate entity to get the issue resolved.
Without that support, my family could have been left trying to understand a waiver termination notice and navigate a complicated appeals or escalation process on our own when neither I nor my Services Facilitator had caused the problem. That is exactly why Services Facilitation has value.
Families should not be expected to become experts in every administrative system, fiscal agent process, MCO process, eligibility requirement, and appeal pathway just to preserve services for which their family member remains eligible. Consumer direction requires both flexibility and accountability.
I support individuals having meaningful choice and control over their services. At the same time, consumer direction must remain appropriate for the individual situation.
Legally Responsible Individuals and live-in attendants are not inherently a complication or a problem when consumer-directed services are being appropriately managed. Families should not be penalized simply because a caregiver lives in the home or is legally responsible for the individual.
However, when there are repeated problems demonstrating that consumer-directed services are not being appropriately managed, there needs to be a meaningful mechanism to address those concerns.
Services Facilitators are in a unique position to observe what is occurring, provide education and corrective guidance, document concerns, and determine when additional intervention may be necessary.
Rather than removing Services Facilitation, DMAS should strengthen the authority of Services Facilitators to identify situations in which the consumer-directed model is not being managed appropriately.
If an individual or EOR repeatedly demonstrates that they are unable or unwilling to fulfill the responsibilities necessary to safely and appropriately manage consumer-directed services, there should be a clear process for the Services Facilitator to escalate those concerns and for the appropriateness of continued consumer direction to be reviewed.
The problem is not the existence of LRIs or live-in attendants. The issue is whether the individual consumer-directed arrangement is being managed appropriately. That determination should be based on what is actually happening in the home, not broad assumptions about who is providing the care.
The proposed 56-hour soft cap creates significant concerns for individuals with extensive support needs. A 56-hour threshold may sound reasonable when viewed only as a weekly number, but it does not reflect the realities of many individuals with significant disabilities.
Many waiver recipients have family members and other natural supports. Having a support system, however, does not mean that those people can provide every remaining hour of care an individual requires.
Family members work. They have other children. They have their own responsibilities. Parents and caregivers age. People need to sleep. Some individuals require assistance, supervision, or support throughout much of the day. The existence of a family support system should not be treated as evidence that paid assistance beyond 56 hours is unnecessary.
For families caring for individuals with extensive support needs, a 56-hour threshold can become a significant burden if the expectation is that unpaid supports will simply absorb whatever needs remain. While this is described as a "soft cap" with an exception process, the practical impact will depend entirely upon how those exceptions are evaluated.
Individuals with documented needs exceeding 56 hours should have access to a clear, consistent, timely, and individualized exception process. The threshold should not become a de facto maximum simply because requesting additional hours becomes administratively difficult or because families are presumed capable of filling every remaining gap.
The purpose of home- and community-based waiver services is to help individuals remain safely in their homes and communities. Policies governing personal assistance should reflect the actual assessed needs of the individual rather than forcing families to provide levels of unpaid care they may not realistically have the capacity to provide.
I am especially concerned about removing higher-level review when an individual is determined to no longer meet waiver level of care. A decision that someone no longer meets level-of-care criteria can result in the loss of services or a cut in service hours that may be essential to that person's ability to remain safely in the community. These decisions warrant meaningful oversight.
My family's LOCERI experience demonstrates why an additional level of review is so important. My children did meet level-of-care requirements. They were ultimately found eligible when the review was actually completed. Yet because of failures within the review process, we still received a waiver termination notice. That experience makes it very difficult to support removing safeguards from this process. The answer to a system capable of producing an erroneous termination notice should not be less oversight.
Removing DMAS higher-level review and allowing a determination to proceed without that additional layer of scrutiny increases the risk that administrative errors, incomplete information, inconsistent interpretation, or process failures can result in inappropriate waiver termination. These are not minor administrative decisions. They determine whether individuals with significant disabilities maintain access to services that allow them to live safely in their homes and communities. There should be checks and balances in a system making decisions of this magnitude. Waiver termination and level-of-care determinations should also be consistent statewide.
Whether someone continues to meet waiver level of care should not depend on which managed care organization administers that individual's benefits or which reviewer happens to be assigned to the case. Virginia should have a consistent statewide process, consistent interpretation of the criteria, appropriate quality controls, and meaningful independent oversight for decisions involving waiver eligibility and termination.
Individuals with comparable needs should be evaluated under the same standards regardless of MCO. There must also be accountability when the process itself fails. Families should not bear the consequences of missed appointments by reviewers, administrative errors, lost documentation, processing delays, or poor communication between organizations. When the system makes a mistake, the individual should not lose services first and be required to fight afterward to prove that the system was wrong.
I ask DMAS to reconsider these portions of the amendments and, at minimum:
Consumer-directed services work because they allow individuals and families to build supports around the realities of their lives. Services Facilitators are often the people helping families understand and successfully navigate an extremely complicated system.
My family's experiences have shown me both sides of that system: a Fiscal/Employer Agent process that took approximately nine months and leadership intervention to correctly process an EOR change, and a level-of-care review process that resulted in a waiver termination notice after a reviewer failed to complete scheduled reviews even though my children ultimately continued to meet eligibility requirements.
In both situations, eliminating Services Facilitation would not have fixed the underlying problem. It would simply have left my family with one less knowledgeable person available to recognize that something was wrong, explain what needed to happen, and help us determine where to go for assistance.
These decisions will have very real consequences for people with disabilities and the families supporting them. Administrative restructuring should not come at the expense of access, consistency, accountability, due process, and the ability of individuals with significant support needs to remain safely in their homes and communities.