FORMAL PUBLIC COMMENT OPPOSING THE PROPOSED 56-HOUR PERSONAL ASSISTANCE SOFT CAP
Virginia Department of Medical Assistance Services (DMAS)
Item 291.MMMMM — 2026 Virginia Budget
Family and Individual Supports (FIS) Waiver
To the Virginia Department of Medical Assistance Services:
I am writing to strongly oppose the proposed 56-hour-per-week soft cap on personal assistance services under Virginia’s Family and Individual Supports (FIS) Waiver and Community Living (CL) Waiver. I am the mother, legal guardian, and paid consumer-directed personal care attendant for my 24-year-old son, who depends on extensive daily assistance and supervision to remain safe in his home and community.
Because his care needs require my availability throughout the day and night, I cannot maintain a regular job outside the home. I must monitor him, assist with routine activities, respond to seizures and emergencies, and help prevent injuries. This is a direct consequence of his disability-related needs, not a matter of personal preference.
For my son, personal assistance is not a convenience, luxury, or optional service. It is essential protection against serious injury, medical emergencies, exploitation, and potentially life-threatening consequences of his disabilities.
I urge DMAS not to implement a 56-hour threshold through exception criteria that fail to recognize complex intellectual, developmental, neurological, and safety-related needs. A soft cap must not become a de facto hard limit for people whose needs do not fit a nursing-oriented assessment framework.
My son’s medical conditions and safety risks
My son has multiple serious and overlapping conditions, including:
These conditions affect his judgment, processing speed, ability to recognize hazards, and capacity to respond safely when something goes wrong. His medications further impair his processing and responses. Although he has an implanted NeuroPace device, he continues to experience seizures and still requires close supervision.
He has already suffered serious consequences when supervision was inadequate. He has fallen multiple times while unattended. Most recently, he fell during an epileptic seizure and fractured two fingers. His medical history also includes hospitalization for aspiration pneumonia, sepsis, and a concussion.
These are not hypothetical risks. They demonstrate why his care must be evaluated based on his actual functioning and safety needs, not solely on whether he can physically complete individual activities.
He requires supervision throughout the day and night
He requires supervision during ordinary activities, including showering, because a seizure or fall could result in devastating injury. He cannot reliably manage everyday living and safety needs independently, and he is vulnerable to exploitation because of his intellectual and cognitive impairments.
This supervision is not companionship. It is necessary to prevent harm and allow him to remain safely in the community.
The proposed exception criteria may not measure his needs accurately
My primary concern is that applying existing CCC Plus exception criteria to people receiving developmental disability waiver services may disadvantage individuals whose need for assistance arises from cognitive, neurological, behavioral, adaptive, and safety-related limitations rather than physical dependence alone.
A person may be able to walk, eat, dress, or participate in bathing while still being unable to perform those activities safely and reliably without supervision. Physical ability is not the same as functional independence. Completing a task does not necessarily mean a person can recognize danger, make safe decisions, respond to an emergency, or understand the consequences of unsafe behavior.
My son’s ongoing seizures, documented falls and injuries, cognitive limitations, impaired processing, and inability to respond reliably to hazards must be considered together. A narrowly defined criterion should not disqualify him from an exception when the overall evidence shows that substantially more than 56 hours of personal assistance are necessary.
An exception process is not a meaningful safeguard if its criteria do not measure the actual risks and functional limitations of the people receiving these services.
DMAS should evaluate FIS and CL Waiver recipients according to their complete disability-related support needs, rather than relying on criteria designed for a different population.
The consequences extend beyond the individual
Reducing personal assistance does not eliminate the need for care. It shifts responsibility to unpaid family caregivers, exposes individuals to greater risk, or may force families to consider more restrictive settings.
As my son’s mother and legal guardian, I am responsible for protecting him and making decisions in his best interests. Being his paid attendant allows me to provide necessary care through the consumer-directed model; it does not make his needs less serious or less deserving of appropriate authorization. Likewise, my inability to maintain outside employment reflects the intensity and unpredictability of his care needs and should not be used to justify reducing his services.
The relevant question is whether the authorized hours are necessary to maintain his health, safety, and ability to live in the community. For my son, inadequate care could result in additional injuries, emergency treatment, hospitalization, or loss of his ability to remain safely at home.
My requests to DMAS
I respectfully request that DMAS revise the proposed approach and include the following protections in the final waiver amendments:
1. Do not implement the 56-hour soft cap as a de facto hard limit.
The threshold must not override an individual’s assessed need for care. Exceptions must be genuinely accessible to people with complex medical, neurological, intellectual, and developmental disabilities.
2. Recognize supervision and safety needs independently of physical dependence.
The exception process must consider impaired judgment, cognitive processing, adaptive functioning, behavioral needs, seizure and fall risks, inability to recognize hazards, and the need for supervision during routine activities. Physical ability to perform a task must not be mistaken for the ability to perform it safely and independently.
3. Modify the criteria to reflect the population served by the FIS and CL Waivers.
Individuals with developmental disabilities should not have to demonstrate their needs through criteria that fail to capture their actual functional limitations or the supervision required to prevent injury. Assessments must consider the person’s complete disability-related support needs.
4. Protect existing authorizations from automatic reductions.
People already authorized for more than 56 hours per week should not lose services solely because their authorization exceeds the proposed threshold. Any change should require an individualized review of the person’s needs and the safety consequences of reducing care.
5. Establish a transparent, individualized exception process.
Families and providers should receive clear written criteria, documentation requirements, decision timelines, and explanations of denials. The process must allow medical records, treating-provider statements, incident histories, and disability-related assessments to demonstrate why additional hours are necessary.
6. Ensure meaningful notice and appeal protections.
Before reducing existing services, DMAS must provide appropriate written notice and information about appeal rights. Continuity of services should be protected during timely appeals, consistent with applicable Medicaid requirements.
7. Evaluate the consequences of reduced services for health, safety, and community living.
Authorization decisions must consider foreseeable risks of injury, hospitalization, and loss of the ability to remain safely at home. The purpose of review should be to determine the assistance actually required, not to force every individual into an arbitrary limit.
Conclusion
I understand the importance of responsible Medicaid administration, but cost controls must not come at the expense of health, safety, and community living.
My son has ongoing epilepsy despite an implanted NeuroPace device, autism, frontal lobe brain damage, mild intellectual disability, generalized anxiety, and significant cognitive limitations. He has fallen repeatedly when unattended, recently fractured two fingers during a seizure-related fall, and has been hospitalized for aspiration pneumonia, sepsis, and concussion. He requires extensive supervision, including during showering and other ordinary activities, because his medical and cognitive limitations create serious safety risks.
Because of the care he requires, I cannot maintain a regular job outside the home. I must remain available to provide assistance, monitor his safety, and respond to seizures and emergencies. This is one of the direct consequences of his substantial disability-related needs and further demonstrates why reducing his authorized care would place an unreasonable burden on our family and increase risks to his health and safety.
Please do not make families like mine prove that our loved ones deserve adequate care only after another preventable injury occurs.
I urge DMAS to reject any approach that places a numerical threshold ahead of an individualized assessment. If a person requires more than 56 hours of assistance to remain safe in the community, the rules must provide a realistic and accessible pathway to authorize those hours.
For my son and many other Virginians with significant disabilities, adequate personal assistance is the difference between living safely in the community and facing avoidable danger, repeated hospitalization, or loss of that ability.
I respectfully request that DMAS revise the proposed policy to protect individuals whose needs cannot be adequately measured by a 56-hour threshold or narrowly defined physical-dependency criteria.
Thank you for considering my comments and recognizing the profound consequences these decisions have for people with disabilities and their families.
Respectfully submitted,
Krizia