I am writing as a mother of two medically complex, disabled children who depend on Virginia Medicaid’s CCC+ Waiver and consumer-directed services. I strongly oppose the proposed elimination of independent service facilitators and their replacement with Support Brokers.

Both of my children have Mowat-Wilson syndrome and complex congenital heart conditions. My son has hypoplastic left heart syndrome, has undergone multiple open-heart surgeries, is wheelchair-dependent, nonverbal, and requires assistance with nearly every aspect of daily living. My daughter has Ebstein’s anomaly, Hirschsprung disease, and Mowat-Wilson syndrome. She recently underwent open-heart surgery and also requires extensive daily care.

Our family depends on Medicaid services, and navigating this system has already been an exhausting battle.

I have personally experienced what happens when Medicaid and managed care organizations make decisions that do not accurately reflect the needs of medically complex children. I have fought Anthem over denied care hours, gone through appeals, and had to repeatedly justify why my children require the assistance they do.

Throughout these challenges, having access to an independent service facilitator has been extremely important.

I am deeply concerned about removing independent service facilitators and transferring their responsibilities to Support Brokers connected to the same fiscal employer agents responsible for processing consumer-directed services.

Who will independently advocate for families when something goes wrong? Who will help parents navigate disputes, denied services, and complicated Medicaid requirements? How will families be protected from potential conflicts of interest?

Parents of medically complex children are already overwhelmed. We are caregivers, advocates, nurses, appointment coordinators, and everything in between. We should not have to fight even harder to receive services our children are entitled to.

I also question why families are being asked to give up the ability to choose professionals who have developed relationships with them and understand their children’s individual needs.

A Support Broker who is unfamiliar with my children’s extensive medical histories cannot automatically replace the knowledge, trust, and continuity that an established service facilitator provides.

I am asking DMAS and Virginia lawmakers to reconsider this change and preserve independent service facilitation as an option for families.

At a minimum, I am requesting:

1. That families retain the right to choose an independent service facilitator.
2. That DMAS explain how Support Brokers will remain independent and accountable when disputes arise.
3. That families receive clear protections against interruptions in services during the transition.
4. That parents and caregivers of medically complex children have meaningful involvement in decisions affecting these programs.
5. That DMAS publicly explain why eliminating independent service facilitation is necessary and what evidence demonstrates that this change will benefit Medicaid recipients.

My children cannot advocate for themselves. They depend on me to be their voice, and I depend on having knowledgeable professionals who can help me navigate an already complicated system.

These decisions are not simply administrative changes. They affect real children, real families, and the quality of care our loved ones receive.

Please listen to the families who rely on these services. We deserve more support and more choices, not fewer.

I strongly urge Virginia to reconsider eliminating independent service facilitators.