Virginia Birth-Related Neurological Injury Compensation Program
Family Advisory Committee Meeting Summary
Virtual meeting
June 24, 2026
1. Welcome and updates
Staff welcomed FAC members and thanked them for meeting two days in a row to provide further input on the draft interim policies. Staff reviewed the goals of these meetings, including reviewing FAC feedback on the draft interim policies, identifying potential revisions to be made prior to July 1 (subject to legal review and leadership approval), and identifying feedback that should be addressed during future policy development process.
2. Review feedback on the draft interim policies (continuation of discussion on 6/23)
Staff provided background information on draft interim policy 1.4: Insurance. A 2015 lawsuit alleged that the Program violated federal law by requiring participants to seek reimbursement from government health programs before seeking reimbursements from the Program. The lawsuit was settled in 2018, with parties including the US Department of Justice (DOJ), Department of Health and Human Services (HHS), Centers for Medicare and Medicaid Services (CMS), Defense Health Agency (DHA) on behalf of TRICARE, and Office of Personnel Management (OPM), which administers the Federal Employees Health Benefits Program (FEHBP). The settlement confirms that the Program will not operate as the “payer of last resort” in relation to the Medicaid program, TRICARE, or the FEHBP.
A FAC member asked whether interim policy 1.4: Insurance means that participants with Medicaid, TRICARE, or FEHBP will need different insurance. Staff will contact families who may be impacted by the lawsuit settlement agreement and work with families to transition or add insurance policies, if necessary. Another member noted that the settlement agreement does not mention Medicare. The member noted that some participants may qualify for Medicare and asked what types of Medicare premiums the Program may cover. Staff will consider this further. Members noted that this could be done as part of a broader effort to support older participants whose needs are evolving.
Staff displayed the draft interim policies including written feedback received from FAC members. Based on written feedback and discussion during the call, the following potential revisions were identified:
- Clarify language on meaning of payer of last resort
- Clarify language on whether the Program or Medicare is the payer of last resort
- Add examples of vehicle-related expenses that may be covered
- Add examples of guardianship and trust-related expenses that may be covered
- Expand caregivers who may be reimbursed for accompanying participants during hospitalization
- Add examples of complex medical care provided by Registered Nurses (RNs)
- Clarify that the Monthly Care Summary is optional
A FAC member suggested that if a participant uses a wheelchair, that should probably be sufficient to justify home modifications. Staff agreed that many accessibility modifications are justified by wheelchair use. There may also be modifications that don’t relate to wheelchair use, and in those cases, the Program would ask for medically necessary documentation.
A FAC member asked whether family members could be reimbursed for minor accessibility modifications to their home, for example, installing handrails. Staff suggested additional consideration of what could be done by family members and what should be done by contractors and referred this question to the policy development process.
A FAC member noted that the agreements referred to in the interim policies should be available. Staff noted that the agreements will be available on the Program’s website in early July, and links can be added to the interim policies.
FAC members expressed concern that the Social Security Administration (SSA) is not allowing some families to assign the Disability Support Payment to special needs trusts. Staff noted that legislative changes would likely be the most effective method to address this issue, and in the meantime the Program can assist families with letters to the SSA, as needed.
A FAC member asked whether the Program covers the costs of administering special needs trusts, for example the costs of a Certified Public Accountant to prepare files for submission to the Commissioner of Accounts. Staff confirmed that the benefit covers ongoing costs associated with guardianship, conservatorship, and trusts, and that these expenses would likely be covered.
Families noted concerns with special education, particularly lack of oversight of compliance with the Individuals with Disabilities Education Act. Staff acknowledged these concerns and noted that all families now have access to the education advocate benefit, which may help ensure participants are receiving educational supports to which they are entitled.
A FAC member asked whether care provided by independent caregivers should be run through insurance. Staff noted that it depends on the insurance policy. Typically, insurance does not cover Personal Care Aide (PCA) and Certified Nurse Aide (CNA) level care, so these would not need to be run through insurance. Policies may cover Licensed Practical Nurse (LPN) and Registered Nurse (RN) care, so these should be run through insurance.
FAC members provided additional feedback on caregiving, which will be addressed when FAC begins working on caregiving policy in July 2026. Members:
- Questioned whether the U.S. Bureau of Labor Statistics Occupational Employment and Wage Statistics Report (BLS) is the appropriate standard to determine family and independent caregiver rates
- Noted that the 50th percentile BLS rate is not sufficient to hire appropriate independent caregivers in many cases and suggested consideration of the 90th percentile
- Suggested that medical professionals such as Registered Nurses (RN), Physician Assistants (PA), and licensed therapists who may also be family caregivers should be paid at the Certified Nursing Aide (CNA) rate or higher
- Suggested the Program cover payroll expenses for families who employ independent caregivers
- Noted that when families use independent caregivers, it is usually less costly than agency care, and therefore saves the Fund money
- Noted that insurance policies tend to reimburse at low rates for RN and LPN care (until benefits caps are exhausted) and suggested that the Program could supplement the rates to help ensure ongoing access to agency care
- In addition to caregiving issues, FAC members requested policy development work on 1) emergency benefits requests; and 2) a mediation option as part of dispute resolution policy.
3. Next steps
Program staff will revise the draft interim policies in accordance with FAC feedback. Once approved, the Program will share the interim policies with families prior to July 1. Program staff will work with FAC to monitor impacts and revise the interim policies, as needed.
Staff thanked FAC members for their continued participation and feedback, and the meeting adjourned.
