Family Advisory Committee – March Meeting Minutes

Virginia Birth-Related Neurological Injury Compensation Program 

Family Advisory Committee Meeting Summary 

March 24, 2026 

Virtual meeting 

1. Welcome and updates 

Program staff provided an update on the search for a new Executive Director. Staff noted efforts to ensure that the process is family-centered and requested volunteers to speak with candidates to help them understand families’ experiences and perspectives.  

Staff confirmed that the Family Advisory Committee (FAC) is a forum to gather feedback from families on potential policy proposals and program improvements. The FAC does not exercise decision-making authority, vote on program actions, or act on behalf of the Board of Directors or the Program in a governing capacity. As an informal advisory body, the FAC is not subject to statutory open-meeting mandates. The purpose of this structure is to ensure that families can continue to communicate freely with one another without creating unintended regulatory burdens. 

2. Policy Development Process 

Staff reviewed the regulatory framework that governs the Program, which includes statute (Code of Virginia Title 38.2 Chapter 50), regulations (Administrative Code Title 14, Chapter 10), an Operating Plan filed with the State Corporation Commission, Program operational policies, and standard operating procedures. Pending approval by the Governor, legislation recently passed by the Virginia General Assembly will make changes to Program governance and benefits administration, effective July 1, 2026.1  

Staff noted that the Program is developing a policy development process, through which the Program will analyze ideas or concerns raised by families, staff, or partners, and seek feedback from the FAC and the broader community of families to help shape solutions. Staff noted that this is a validated family-centered process and invited the FAC’s feedback to refine the process, so it is well-suited to the community’s needs.  

3. FAC Feedback on Policy Development Process 

Program staff thanked FAC members for sharing thoughtful and detailed feedback on the policy proposal Structured Authorization of Extended Family-Provided Skilled Care. Staff requested feedback on:  

• The Program’s efforts to gather the FAC’s feedback on the proposal 

• A potential future-state policy development cycle, which could include FAC input into prioritization of policy projects, standardized documentation, and set policy development cycles with periods for FAC and community input 

Several FAC members noted that they felt blindsided when they received the policy proposal and requested discussion and the opportunity to ask questions before receiving detailed proposals. Members noted that some aspects of the proposal were difficult to understand and suggested clearly stating the problem and the use of plain language more generally.  

FAC members shared personal experiences of their children’s care needs and providing care up to 24 hours per day. They noted that there is no legislative authority for capping the hours that family members can be reimbursed for providing care. Members expressed concerns about ongoing, burdensome requirements on families to verify care needs and caregiver competency, which felt inconsistent with the Program’s stated goal of a family-centered approach to administering benefits. They also highlighted potential inconsistencies in how many hours families are being reimbursed for care. Members suggested consideration related issues outside of the scope of this proposal, including reimbursing more than one caregiver at a time, reimbursing a family caregiver during a child’s hospitalization, and managing tax implications for independent caregivers and relatives that live outside of the participant’s home. 

4. FAC Feedback on Policy Proposal: Authorization of Extended Family-Provided Skilled Care 

Program staff provided an overview of FAC members’ feedback on the policy proposal. Thirteen members provided feedback via a Microsoft Form. There was almost unanimous support for reimbursing family-provided care up to 24 hours per day, where medically necessary. Many responses were critical of current caps, noting they are not based on the statute and are unnecessarily restrictive. Several responses were concerned about inconsistent and unclear terminology including “skilled care,” “skilled nursing intervention.” Most responses did not support requiring training or competency verification. Generally, responses noted that the process is too burdensome/restrictive. Many requested a streamlined process and a timeline for review and approval. 

Staff summarized potential revisions in response to FAC feedback: 

• Allow for reimbursement of family-provided care for all medically necessary care hours 

• Remove requirement for independent medical review prior to authorization  

• Remove caregiver competency verification requirement for family members  

• Include waiver/release of liability  

• Streamline request and approval process and include clear timelines 

Staff will share a revised proposal with FAC. The potential future-state policy development process will also include a process for feedback from the broader community of families. 

Staff thanked FAC members for contributing their time, experience and expertise to help refine the policy development process and strengthen the policy proposal on family-provided care. A FAC member appreciated the collaborative approach. 

Meeting adjourned.