RICHMOND, Va. (WAVY) – “I kept thinking, oh my gosh, I can’t afford my child.”

Thoughts no parent wants to have while taking home their newborn were going through Sandy Hermann’s mind. ​​

Her daughter, Felicia, is now 23 and has an undiagnosed disorder that affects her nervous system and muscles, so she has a breathing tube, cannot walk and is non-verbal. ​​

The costs for care add up for the Hermann family, who live in Virginia Beach. Nurses are in their house everyday. Early on in her life, Felicia was approved for coverage with a Medicaid waiver. Medicaid picks up the costs when the family’s private insurance coverage can’t. ​​

“My daughter requires somebody to take care of all of daily living tasks,” Hermann said. “A facility wasn’t ever what I wanted to do with my daughter. I wanted to take care of her. I wanted her to come home.”​​

After years of advocating for her daughter, Hermann recently joined a new group that formed in response to the expansion of Medicaid last year. It’s called the Medicaid Member Advisory Committee, people who are on Medicaid and loved ones are involved. The group is made up of about 10 people from across the Commonwealth. ​​

The group’s goal is to talk about issues they see in coverage and to provide feedback to the agency that oversees Medicaid, the Department of Medical Assistance Services (DMAS). They met in Richmond Monday for their third meeting this year. ​​

DMAS Director Dr. Jennifer Lee says the agency wants to know what “their experience of care was like and what we can do better.” ​​

Since the eligibility for Medicaid coverage was expanded last year by the General Assembly, as of Aug. 26 more than 306,000 adults have signed up. More than 1.3 million Virginians are Medicaid recipients, state officials say a large chunk of them are children.

​​Committee members brought up concerns Monday about how DMAS tells members and families about new services and what’s covered. Notices are sent out to physicians, care providers and advocacy groups. Some said it’s difficult to sort through the material because it’s written for doctors.​​

“They said the ways we were communicating were not as effective as they could be and that we needed to work on updating our website, updating our written notices and finding better ways to get them the information they really need for themselves and their families,” Dr. Lee said. ​​

State officials hope overtime that this committee’s feedback will help to improve services and could impact policy decisions in the future. The General Assembly has to sign off on any major changes made to services in the budget. During 2020 General Assembly session, lawmakers will be crafting a new two-year budget. ​​

“I think it’s just important to know what the families need and desire and want,” Hermann added.

​​If you are interested in providing feedback on Medicaid services or are interested in getting involved with the Medicaid Member Advisory Committee, email MAC (at)  ​