Family Advisory Committee – May Meeting Minutes

Virginia Birth-Related Neurological Injury Compensation Program 

Family Advisory Committee Meeting Summary 

May 8, 2026 

Virtual meeting

1. Welcome and updates 

Staff noted upcoming events, including a meeting of the Board of Directors on May 12. As part of the ongoing efforts to strengthen the Program’s website and claims processing, staff will reach out to Family Advisory Committee (FAC) members with opportunities to provide feedback on plans for an updated website and experiences with the Rising Portal.  

2. Prioritizing policy development work 

FAC members continued reviewing benefits categories for the purpose of prioritizing policy development work beginning July, 2026. This continued the discussion adjourned at the most recent FAC meeting on April 28, 2026. 

Program staff noted that legislation recently passed by the Virginia General Assembly will make changes to Program governance and benefits administration, effective July 1, 2026.1 In response to the legislative changes, the Program is undertaking a rapid review process across approximately 15 benefit types to ensure that benefits administration complies with the legislation when it takes effect on July 1. The process includes analyzing the legislation, regulations, handbook, and other programmatic rules and forms and drafting interim policies and revised forms. The interim policies will guide benefits administration from July 1 in alignment with the new laws and override any contradicting information in the regulations2 and handbook3  which will take longer to amend. The interim policies will apply until they are replaced by amended regulations or final policies, which will be developed in collaboration with the FAC. Today’s review considers how the interim policies will change benefits administration from July 1, and requests FAC input on priority policy development projects beginning July 1. 

In relation to travel expenses, the Program plans to begin covering meals and incidentals for local travel at the General Service Administration’s (GSA) date of travel rate.4 This means that families would receive a stipend and would not need to provide receipts for means and incidentals. A member suggested that the stipend also be available for caregivers when a participant is hospitalized. 

A FAC member asked whether pre-authorization will be required for travel greater than 100 miles and staff advised that the Program will no longer require pre-authorization. The new standard is reasonable and medically necessary travel, and the Program will reimburse for lodging, meals, and incidentals for reasonable and medically necessary overnight travel for the participant and up to two caregivers. Staff noted that the Program will no longer require the medical appointment verification form; staff can verify medical appointments and travel through submission of invoices, insurance documentation, or other documents that show that the participant attended their appointment.  

A member asked whether the new rules will apply to expenses incurred before July 1. Staff confirmed that the legislation is not retroactive, meaning the new rules apply to expenses incurred after July 1 and the old rules apply to expenses incurred before that date. Staff noted three exceptions, the new guardianship, conservatorship, and trusts benefit and the education advocate benefit are available immediately, and the programmatic cap of $75,000 for vans no longer applies. A member asked whether personal property taxes for 2026 would be covered and staff confirmed that the interim policy, which is still under development, will address personal property taxes and insurance premiums. 

In relation to psychotherapeutic services, this benefit will increase to a total annual benefit of up to $10,000 for immediate family members that live with participants. A member asked whether family members are required to use insurance when accessing this benefit. Staff indicated that the legislation does not require family members to use insurance in relation to this benefit. 

In relation to insurance, FAC members supported policy language stating that use of in-network providers is preferred but not required. Members also called for Case Specialists to assist families to find in-network providers and/or insurance plans that provide coverage for out-of-network providers, as needed. A member asked if the Program covers insurance premiums for participants covered under an employer-sponsored plan. Staff confirmed that the Program covers a portion of such premiums based on family size, for example, in a family of four, the Program covers one quarter of the cost of the employer-sponsored plan. 

In relation to guardianships, conservatorships, and trusts, a member suggested that Case Specialists provide some basic guidance on issues like special needs trusts and refer families to other organizations or experts, as needed. Another member urged the Program to take into account older parents and think through what this benefit may cover if parents are no longer able to serve as guardians and conservators. Program staff noted that the benefit covers ongoing expenses associated with guardianships, conservatorships, and trusts, and the Program will continue to think through these issues with aging families in mind. 

In relation to expenses associated with funerals, burials, and cremations, members suggested that pre-paid expenses should be reimbursed when incurred versus only paying for this benefit upon death. Staff confirmed that the interim policy will address this issue. 

3. Medically necessary and reasonable standard 

Next, FAC members considered the medically necessary and reasonableness standard, that will govern most benefit categories beginning July 1. Program staff noted that the Program strives to be a learning organization, one that listens, adapts, and improves over time. Staff invited FAC members’ feedback on developing an objective standard of reasonableness, emphasizing the importance of treating families equitably. 

FAC members shared the benefits many participants have experienced participating in therapies and using equipment not typically covered by insurance. They urged the Program to cover these items without the need for insurance denials. Staff shared draft policy language on the medically necessary standard: 

The Program covers medically necessary expenses, meaning that the service or item is needed to support the participant’s health, safety, or functional independence.  

Medical necessity is a clinical determination, which is typically made by the participant’s treating medical provider or a provider with relevant expertise.  

Medically necessary services and items may evolve over time, and requests should relate to the participant’s current life stage. 

A member supported the inclusion of functional independence in the definition, noting that this aspect of care is not always well understood. Another member suggested that participants who have been declared incompetent by a court should not be left unattended and need full-time care. 

Staff shared draft policy language on the reasonableness standard: 

The Program covers reasonable expenses, meaning: 

• Proportionate to the identified need and not excessive compared to available alternatives 

• Customary and consistent with the cost of care, services, and equipment in the same region  

Reasonableness is decided on an individualized basis and may be influenced by the participant or the family’s specific needs. 

Staff shared a proposed process to support fair and consistent assessment of housing modifications or construction under the medically necessary and reasonable standard. The process includes a meeting with Program staff, a clinical assessment to establish components needed to meet medical or functional needs, and a request including plans and two itemized proposals. Routine modifications would be approved at the Program level. Complex modifications or new home construction requests would be reviewed by an independent panel including an occupational therapist and a contractor with expertise in accessibility. 

A member expressed concern that some occupational therapists may not have the expertise to provide recommendations on housing modifications. Staff noted that the Program would cover the costs of suitably qualified occupational therapists or other professionals to assess the participant and environmental barriers in their current home.  

A member requested consideration of families that have already had a housing modification in the past and what will happen if another modification is needed or the participant eventually needs to move into an assisted living facility. Staff noted that they are working through these issues and that in alignment with the new legislation, the one-time housing modification limitation and the monetary cap will both fall away. 

A member suggested that the Program engage a contractor and an occupational therapist to assist families preparing for home modifications or construction. The member felt that this would help families prepare reasonable housing requests that best serve the participants and that this step should occur before plans are drawn and bids sought. Another member expressed support for an occupational therapist making recommendations but not conducting an evaluation. 

A member expressed concern that, in the past, some families had to sacrifice existing space in their homes, for example, converting a garage into an accessible bedroom. Another member expressed concerns about submitting multiple bids to the Program, noting that the cheapest option is not always best. 

A member noted that accessible housing is not necessarily in high demand and the Program may not recuperate money invested in housing modifications when houses are sold. He called for potential resale to be considered as part of the design process. 

Noting that the discussion had run over time, the meeting adjourned.