I submit these comments as the disabled mother and authorized representative of two medically complex, developmentally disabled children, and as an advocate for families navigating Virginia's Medicaid home- and community-based services (HCBS) system. I am also a licensed attorney, currently on inactive status due to my own disabling medical conditions.
Despite my legal training, navigating Virginia's Medicaid waiver system has proven extraordinarily burdensome. I am the primary unpaid caregiver for my children, both of whom have complex constellations of medical, neurological, developmental, and functional impairments. Much of my limited physical capacity and time is consumed by administrative advocacy simply to secure and maintain necessary services.
I strongly oppose the proposed elimination of independent Services Facilitation, removal of higher-level nursing review following adverse LOCERI determinations, and proposed 56-hour personal assistance cap under the Developmental Disability (DD) waivers.
Collectively, these changes threaten to reduce meaningful consumer choice, eliminate independent safeguards, and shift additional administrative burdens onto families already struggling to maintain medically necessary community-based care.
I strongly oppose eliminating Services Facilitation as a separately selectable service and replacing it with Support Brokers operating through Fiscal/Employer Agent (F/EA) contracts.
Consumer direction should mean more than selecting an attendant and approving timesheets. It should preserve meaningful choice regarding the professionals who assist individuals with disabilities in navigating and maintaining their services.
My son's Services Facilitator, Rozeena Khattak, submitted public comment #242008 on September 28, 2026. I respectfully request that DMAS consider her comments alongside mine.
Our family has navigated repeated authorization disputes, substantial proposed reductions in personal assistance hours, reconsiderations, and a wrongful CCC Plus Waiver termination ultimately reversed through a State Fair Hearing.
Throughout these proceedings, our Services Facilitator has been considerably more than someone conducting assessments or completing paperwork.
She understands my son's complex medical and developmental conditions, functional limitations, activities of daily living, safety risks, and extensive documentation supporting his authorized care. Critically, she understands not simply WHAT services he requires, but WHY they were authorized, how his needs have historically been documented, and which prior adverse determinations have been challenged or reversed.
That institutional knowledge cannot simply be transferred through an electronic file or standardized assessment.
During previous authorization disputes, we encountered serious concerns regarding whether DMAS adequately reviewed documentation submitted through its Atrezzo portal, including materials supporting services previously reinstated following appeal.
A knowledgeable Services Facilitator provides continuity when families must repeatedly establish needs already documented and recognized. She can identify inconsistent assessments, missing evidence, and administrative errors before they become interruptions in care.
Equally important, she is accessible.
When I have questions, encounter conflicting agency instructions, or need assistance understanding authorization requirements, I can reach someone who knows my family and understands the consequences of an interruption in services.
My experiences with DMAS and Fiscal/Employer Agents have been markedly different.
Obtaining substantive responses to telephone calls or emails can be exceptionally difficult. Reaching the same representative twice is often nearly impossible. Families repeatedly explain complicated histories to individuals unfamiliar with their circumstances, frequently receiving inconsistent guidance or no meaningful response.
Why should beneficiaries be required to surrender a longstanding, responsive professional relationship in favor of a centralized structure that has not demonstrated comparable accessibility or continuity?
I am particularly concerned about structural independence. F/EAs already perform essential enrollment, payroll, and compliance functions. Under the proposed model, Support Brokers would operate within that same contractual structure.
Who advocates for a beneficiary when the problem involves the F/EA itself?
How can a broker whose employment, supervision, or performance evaluation is controlled by that organization be expected to independently challenge its errors or practices?
Even absent an actual conflict, this consolidation creates serious questions about independence and accountability.
DMAS must also explain how the proposed model will preserve individualized assistance when attendants unexpectedly resign, authorization disputes arise, medical conditions change, or administrative errors interrupt essential care. These problems do not conveniently occur between scheduled visits.
I urge DMAS to preserve independent, beneficiary-selected Services Facilitation as an available alternative to Support Brokerage. If Support Brokerage is genuinely superior, beneficiaries should be permitted to choose it rather than having their existing alternative eliminated.
At minimum, DMAS must provide a meaningful pathway for qualified existing Services Facilitators to continue serving established clients; guarantee meaningful choice of support professionals; establish enforceable qualifications, caseload limits, response times, and conflict-of-interest protections; and preserve existing authorizations throughout the transition.
A system cannot meaningfully claim to strengthen consumer direction while eliminating the consumer's ability to choose the professional who helps direct their care.
I am particularly alarmed by the proposal to eliminate mandatory higher-level nursing review when a LOCERI determination concludes that an individual no longer meets nursing-facility level-of-care requirements.
Under Virginia's CMS-approved 1915(c) waiver application, an FFS LOCERI Quality Analyst may qualify through a bachelor's degree in a human or health services field, Registered Nurse licensure, or Licensed Practical Nurse licensure.
DMAS confirmed these qualifications directly to me in correspondence from its FFS LOCERI Team, expressly acknowledging that social work licensure is not required.
The existing framework separately provides for an RN to make the final level-of-care determination.
Eliminating mandatory higher-level nursing review therefore raises the possibility that an individual could lose essential waiver services following an adverse assessment conducted by someone without nursing licensure, without the current mandatory RN review safeguard.
My family's experience demonstrates why this matters.
My son is both medically complex and developmentally disabled. His constellation of conditions includes Childhood Apraxia of Speech, hypotonia, failure to thrive, significant feeding and oral-motor difficulties, visual impairments requiring surgery, Autism Spectrum Disorder, ADHD, and substantial functional and safety-related impairments.
He requires extensive assistance with feeding and nutrition, toileting, dressing, grooming, communication, and daily safety. His documented difficulties include choking risks, elopement, and nutritional concerns requiring prescription appetite stimulation.
Following an April 27, 2026 in-house LOCERI review, DMAS issued a June 11 notice terminating his CCC Plus Waiver eligibility.
I challenged that determination through Virginia's extraordinarily administratively burdensome State Fair Hearing process, requiring extensive documentation, preparation, and formal proceedings.
Importantly, DMAS conceded during the State Fair Hearing that my son satisfied BOTH the activities-of-daily-living dependency requirements AND the medical or nursing needs criteria.
The dispute centered on the third criterion: whether he would be at risk of nursing facility placement within 30 days without waiver services.
Despite acknowledging his significant medical and functional dependencies, DMAS argued that he was not at risk of destabilization without the substantial personal assistance services he had historically received.
This effectively required our family to prove a counterfactual: what would happen to a medically complex, developmentally disabled child if the very supports that had historically maintained his safety and stability were withdrawn.
Throughout the hearing, DMAS repeatedly emphasized that CCC Plus is "not a diagnosis-based waiver."
I understand that eligibility depends on functional, medical, and institutionalization-risk criteria rather than diagnoses alone. But this does not mean that the medical and functional consequences of diagnosed conditions can be disregarded.
DMAS also emphasized the absence of recent hospitalizations, despite my son's having undergone a several-hour outpatient surgical procedure the month before the hearing, followed by a difficult recovery.
The absence of an inpatient admission does not establish the absence of medical complexity, functional dependency, or prospective institutionalization risk.
Under 12VAC30-60-303, institutionalization risk is evaluated in the absence of community-based services. The standard does not require an individual to first experience a preventable emergency or institutional placement.
How is a family expected to prove that a child would deteriorate without care when the very purpose of that care is to prevent deterioration?
There is a fundamental distinction between demonstrating that a child has remained stable WITH substantial assistance and establishing that the child would remain safe WITHOUT it.
Following our August 20, 2026 State Fair Hearing, a September 14 written decision reversed the termination.
Yet even after prevailing, we continued encountering administrative obstacles to restoring services.
A State Fair Hearing is an essential due-process protection, but it cannot substitute for appropriate clinical scrutiny BEFORE an adverse determination is made.
I request that DMAS retain mandatory independent RN-qualified review of adverse LOCERI findings, explain what clinical safeguards would remain under the proposed process, identify the qualifications of those making final determinations, and preserve meaningful notice, appeals, and continuation-of-benefits protections.
The absence of institutionalization should not, standing alone, be treated as evidence that community-based supports are unnecessary. It may instead demonstrate their effectiveness.
My son's experience is not our family's only encounter with the CCC Plus Waiver system.
In late June 2026, my medically complex, developmentally disabled daughter underwent a county-level screening conducted by a registered nurse and was found eligible for the CCC Plus Waiver.
Despite that determination, we have not successfully secured waiver services for her.
This is not because her needs have disappeared. Rather, the extraordinary amount of time, administrative effort, and physical energy required to challenge my son's waiver termination, navigate his annual renewal, and address ongoing service interruptions has left me with inadequate capacity to pursue implementation of my daughter's eligibility.
I am simultaneously managing the care of two medically complex young children while living with substantial disabilities myself.
Eligibility on paper is not meaningful access to care.
For families already managing extraordinary caregiving demands, the accumulated burdens of screenings, documentation, enrollment, authorizations, provider coordination, appeals, and unresolved agency questions can themselves prevent access to necessary services.
This is precisely why eliminating an established, accessible, independently selected Services Facilitator is so concerning.
My son's most recent annual renewal provides a concrete example of how DMAS documentation requirements can fail to accommodate actual caregiving.
The revised DMAS-97A/B requires task-specific time entries in 15-minute increments. Yet many essential activities of daily living take less than 15 minutes individually while still requiring hands-on assistance every day.
My medically complex son has a fixed 90-minute window each morning before school or therapy begins. During that period, a single attendant must get him out of bed, assist with toileting, transferring, grooming, dressing, and feeding, and prepare him to leave on time.
On mornings involving toileting or incontinence incidents, the attendant must also bathe him, change soiled bedding, and initiate laundry.
These are necessary tasks that must occur within a fixed timeframe. The caregiver cannot simply extend the shift because documentation increments produce a larger total.
Yet assigning separate 15-minute increments to each required task can result in cumulative entries exceeding the attendant's entire 90-minute shift.
For a task requiring five or ten minutes, what is the appropriate entry? Fifteen minutes, overstating actual time? Or zero, suggesting that no assistance is necessary?
Entering a minimum of 15 minutes for each task may exceed the available caregiving period. Entering zero or omitting necessary tasks understates my son's functional dependencies.
The revised CCC Plus Provider Manual requires requested hours to reflect actual assistance time. DMAS must explain how beneficiaries can comply with that standard when its reporting increments can produce totals inconsistent with the actual caregiving period.
My Services Facilitator and I spent substantial time attempting to reconcile these discrepancies and explain why the required entries could not accurately represent his care.
The existence of a functional dependency and the number of minutes necessary to address it are separate facts. Neither should have to be misrepresented to accommodate a standardized form.
DMAS should permit documentation of actual task durations, including those under 15 minutes, while allowing aggregate authorized hours to be expressed in appropriate billing increments. Clear instructions must also address variable needs, including incontinence-related care.
This experience further demonstrates why independent Services Facilitation matters. When DMAS implements requirements without adequate practical guidance, families need accessible professionals who understand their circumstances and can help prevent documentation problems from causing inappropriate service reductions.
Although my son currently receives CCC Plus services, our family has also pursued DD waiver services because his substantial needs arise from overlapping medical, neurological, developmental, and functional impairments.
I strongly oppose the proposed 56-hour weekly personal assistance cap under the Community Living and Family and Individual Supports waivers.
Calling a threshold a "soft cap" does not prevent it from becoming a practical ceiling through narrow exceptions, inconsistent determinations, administrative delays, or burdensome evidentiary requirements.
Fifty-six hours amounts to eight hours daily. Disability-related care needs do not follow an eight-hour schedule.
I am particularly concerned about applying CCC Plus-style exception criteria to DD participants whose primary support needs may arise from developmental, behavioral, communication, and functional impairments rather than traditional nursing-related conditions.
My children's medical and developmental needs cannot be neatly separated into administrative categories.
The Commonwealth should not presume that unpaid family caregivers can safely provide unlimited additional hours simply because authorized services reach a predetermined threshold.
I know firsthand the consequences of that assumption.
DMAS should withdraw the proposed cap or establish DD-specific, individualized exception criteria with clear procedures, timely determinations, meaningful appeal protections, and continuity of services pending review.
These proposals must also be considered against the broader difficulties families encounter obtaining reliable guidance from DMAS.
On September 30, 2026, I submitted 50 detailed questions concerning the October 1 implementation of Electronic Visit Verification requirements for live-in caregivers.
Those questions addressed compliance obligations, documentation, technical errors, caregiver responsibilities, and the potential consequences for beneficiaries.
Despite follow-up correspondence, including an October 13 request for a point-by-point response, I have received no substantive answers.
Although EVV is separate from these amendments, the experience illustrates a recurring problem: DMAS implements consequential administrative changes without ensuring that affected families can obtain clear, authoritative instructions.
Before transferring additional beneficiary-support responsibilities to F/EAs, DMAS should demonstrate that those contractors have the staffing, accessibility, independence, and accountability necessary to perform those functions effectively.
Finally, I urge DMAS and CMS to evaluate these proposals collectively.
Virginia proposes to establish a presumptive limit on DD personal assistance hours, eliminate independently selectable Services Facilitation, consolidate support functions within F/EA contracts, and remove an existing level of clinical review following adverse CCC Plus eligibility findings.
These amendments would simultaneously diminish access to independently selected professionals familiar with participants' longitudinal needs and remove a clinical safeguard against erroneous waiver termination.
As an attorney, I possess training that helps me interpret regulations, prepare documentation, and challenge adverse determinations. Yet even with that background, navigating this system while disabled and serving as the primary unpaid caregiver for two medically complex children has been extraordinarily difficult.
How are families without legal training, reliable technology, flexible employment, or the physical and financial resources necessary to contest agency decisions expected to navigate the same system?
What happens to individuals whose caregivers cannot pursue a State Fair Hearing, repeatedly escalate unanswered questions, or spend countless hours reconciling confusing forms and instructions?
I recognize Virginia's legitimate interest in program integrity, fiscal stewardship, and administrative efficiency. But those objectives cannot justify eliminating meaningful choice, independent professional relationships, or safeguards against erroneous decisions.
I respectfully urge DMAS to preserve independent Services Facilitation as a participant-selected option; retain mandatory clinical review of adverse LOCERI determinations; ensure personal assistance authorizations remain individualized; and establish enforceable protections for continuity, accountability, and due process.
The purpose of HCBS waivers is to make safe community living possible. Virginia's policies should protect that outcome, rather than impose administrative barriers that threaten to undermine it.
Families should not have to repeatedly fight to preserve the services that make community living possible.
Lauren Buchbauer
Mother, Authorized Representative, and Disability Advocate
California-Licensed Attorney (Inactive)