Dear Virginia Department of Medical Assistance Services (DMAS):
I am writing to express my concerns regarding the proposed Medicaid waiver amendments establishing a 56-hour soft cap on personal assistance services and removing the exemption from Electronic Visit Verification (EVV) requirements for live-in caregivers.
As a family member of an individual with a disability and an advocate for people with intellectual and developmental disabilities, I understand the importance of accountability, appropriate use of Medicaid funds, and ensuring that services are delivered as authorized. However, I am concerned that these proposed changes may create additional burdens for individuals with disabilities and the people who provide their care, without adequately accounting for the realities of caregiving in the home.
My concern about the proposed 56-hour soft cap is that a standard threshold may not adequately reflect the individualized needs of people who rely on personal assistance to live safely and with dignity in their homes and communities.
The support required by an individual with a disability like my daughter is not always predictable or easily divided into scheduled blocks of time. Needs may vary throughout the day and night, and the level of assistance required can be influenced by an individual's physical needs, communication, behavior, daily routines, and a myriad of other circumstances.
Although the proposal allows for exceptions, I am concerned about how accessible and timely that process will be. Families should not have to navigate a complicated authorization process or repeatedly justify the need for essential assistance when that support is necessary to maintain the individual's health, safety, and quality of life.
I ask DMAS to ensure that the 56-hour threshold does not become a practical limit for individuals whose assessed needs require more assistance. The exception process should be individualized, transparent, timely, and responsive to changes in need. Existing services must not be disrupted simply because an exception request is pending, consistent with applicable requirements.
Concerns Regarding EVV Requirements for Live-In Caregivers
I am also concerned about the proposed removal of the live-in caregiver exemption from Electronic Visit Verification requirements.
Caregiving in the home is often fluid and continuous. Unlike a traditional work setting, where an employee arrives, begins a shift, takes breaks, and clocks out at a defined time, caregiving involves responding to needs as they arise throughout the day. A caregiver may move from assisting with personal care to preparing a meal, responding to a change in the individual's needs, helping with daily activities, or providing reassurance and supervision. These responsibilities do not always follow a predictable schedule with a clear beginning and end.
Requiring live-in caregivers to remember to clock in and out throughout this fluid caregiving environment creates a real concern. The caregiver may become focused on remembering the required electronic entries rather than remaining fully attentive to the individual who needs assistance. The additional responsibility can create anxiety and stress, particularly when the caregiver is already managing multiple responsibilities and responding to the changing needs of the person receiving care.
This is not simply a matter of remembering to use a device. It is a question of whether the documentation process appropriately reflects the realities of providing care in one's own home. When caregiving is continuous and responsibilities shift naturally from one activity to another, repeated clock-in and clock-out requirements may be difficult to apply in a practical and consistent manner.
I recognize the importance of verifying that Medicaid-funded services are provided and documented appropriately. However, accountability measures should be designed in a way that does not unnecessarily interfere with caregiving, increase caregiver anxiety, or create avoidable opportunities for documentation errors. A missed electronic entry should not automatically be treated as evidence that authorized care was not provided.
I urge DMAS to reconsider the removal of the live-in caregiver exemption or, at a minimum, establish a practical alternative that accurately documents services while recognizing the unique circumstances of live-in caregivers. Such an approach should include clear guidance, adequate training, a reasonable process for correcting missed or inaccurate entries without being punitive, and safeguards to prevent technical or documentation problems from delaying payment or disrupting care.
I am particularly concerned about the combined effect of these proposed changes. Families providing support at home are already managing complex care needs, coordinating services, maintaining employment, and navigating Medicaid requirements. Adding tighter authorization thresholds and more frequent electronic documentation responsibilities increases the administrative and emotional burden on families who are working to keep their loved ones safely supported in the community.
When families are overwhelmed by administrative requirements or cannot obtain sufficient assistance, the consequences extend beyond the household. They can affect the individual's independence, remaining and participating in the community, and their ability to remain in the least restrictive setting appropriate to their needs.
I encourage DMAS to seek meaningful input from individuals receiving services, family caregivers, and other stakeholders who understand the day-to-day realities of home-based care. Their experiences should inform the design of policies that directly affect their lives.
I respectfully request that DMAS:
Medicaid policies should support the people they are intended to serve. While accountability and program integrity are essential, they must be balanced with compassion, common sense, and an understanding of the realities of caregiving.
I urge DMAS to carefully consider these concerns before implementing changes that could unintentionally make it more difficult for individuals with disabilities to receive the support they need and for caregivers to provide that support effectively.
Thank you for the opportunity to share my concerns and for your consideration of the individuals and families who depend on Virginia's Medicaid waiver services.
Sincerely,
Allison Kay Coles-Johnson, BSN, MBA