I am the parent and guardian of an adult with an intellectual disability who receives services through Virginia’s Family and Individual Supports (FIS) Waiver. I am concerned about the proposal implementing Item 291.MMMMM of the 2026 Budget to establish a 56-hour-per-week “soft cap” on personal assistance under the FIS and Community Living waivers using the same exception criteria currently applied under the CCC+ Waiver.

My primary concern is that the CCC+ exception criteria were developed for a population and level-of-care framework that may not adequately measure the needs of people with intellectual and developmental disabilities.

My son is a good example of the problem. He can physically perform portions of a number of activities of daily living, but that does not mean that he can safely or reliably perform those activities independently. His disability creates substantial needs for prompting, supervision, monitoring, assistance with hygiene and daily routines, and support to make appropriate choices and remain safe. He cannot simply be left to manage his daily needs independently because he possesses the physical ability to perform an activity.

This distinction is fundamental for people with intellectual and developmental disabilities. A system that measures need primarily through physical ADL dependency and skilled or medical nursing needs risks substantially understating the actual assistance required by people whose principal limitations are cognitive, adaptive, behavioral, or related to judgment and safety.

I am particularly concerned that the proposed exception incorporates the CCC+ Level B/Level C threshold in addition to the alternative exception criteria. Even if an individual demonstrates significant dependency in Behavior and Orientation, that individual may still have difficulty qualifying for an exception if the required level-of-care determination depends heavily on physical ADL dependency and medical or skilled-nursing needs.

This could produce a perverse result: an adult with an intellectual disability may require supervision and assistance throughout much of the day to remain safely in the community, yet fail to qualify for more than 56 hours because he is physically capable of eating, walking, transferring, or participating in dressing and bathing.

That would not accurately measure the person’s need for personal assistance, and it could increase rather than decrease the risk of institutionalization.

I therefore respectfully request that DMAS not simply transplant the existing CCC+ exception criteria into the FIS and CL waivers without modification. At a minimum, the exception process should:

1. Recognize cognitive, intellectual, adaptive, behavioral, judgment, orientation, and safety-related limitations independently of physical ADL dependency.
2. Give appropriate weight to the need for prompting, cueing, supervision and monitoring when an individual can physically perform an activity but cannot initiate, sequence, complete, or safely perform it without assistance.
3. Permit an exception when the individual’s documented disability-related needs demonstrate that more than 56 hours of personal assistance are necessary to maintain the individual safely in the community and avoid institutionalization, even when the individual does not satisfy a nursing-oriented Level B or Level C test.
4. Evaluate the individual’s actual support needs under the DD waiver assessment and Plan for Supports rather than requiring people with developmental disabilities to demonstrate their needs primarily through criteria designed for the CCC+ population.
5. Protect individuals who are already authorized for more than 56 hours from an automatic reduction. Existing hours above 56 should remain authorized until an individualized assessment determines that a reduction can occur without jeopardizing the individual’s health, safety, community living, or ability to avoid institutionalization.
6. Establish a clear reconsideration and appeal process before hours above 56 are reduced, with continued services during a timely appeal to the extent required by applicable Medicaid law.

I also ask DMAS to clarify publicly how the proposed exception criteria will apply to individuals with developmental disabilities whose need for extensive personal assistance results primarily from intellectual, cognitive, adaptive, behavioral, or safety limitations rather than skilled nursing needs or total physical dependency in ADLs.

I understand the Commonwealth’s interest in ensuring that Medicaid-funded services are appropriately authorized. However, a 56-hour limit should not become a de facto hard cap simply because the exception criteria do not accurately measure the needs of the population served by the FIS and CL waivers.

The appropriate question should be whether the additional personal-assistance hours are reasonably necessary, based on an individualized assessment, for the person to live safely in the community and avoid institutionalization. For Virginians with intellectual and developmental disabilities, that assessment must recognize supervision, prompting, judgment, adaptive functioning and safety needs—not just physical incapacity.

Thank you for considering these concerns and for ensuring that implementation of Item 291.MMMMM protects individuals with developmental disabilities whose support needs do not fit neatly within a nursing-facility-oriented assessment model.