Untrapped: The Felicia Hermann Story

It wasn’t long after Sandy Hermann delivered her baby girl that she found herself in a room -- sitting and waiting. She wanted answers. On the other side of the table from Hermann buzzed a team of doctors eager to share information about a long-term pediatric residential care facility nearby.

“My feeling though,” recalls Hermann, “if you can’t even tell me about my daughter, and you can’t even diagnose her…then how can you make a decision to place her in an institution.”
Hermann’s daughter, Felicia, had an undiagnosed neuromuscular disorder. She was unable to move her facial muscles – she was essentially drowning on her own secretions, leading to a tracheotomy.

Thirteen years later, Felicia Hermann lives at home. She lives, plays, and learns just as anyone else – in the community.

Using a communication system operated off of infrared light; Felicia regularly speaks to her family and friends. “We started with a one button system and then we’d go to two, we’d record ‘good morning’ and ‘good afternoon’,” explains Sandy Hermann, who is now knowledgeable of the array of augmentative communication devices available. “Starting out she had a little switch that sat on her wheelchair and when the bus driver would come to pick her up, she’d say ‘good morning’.” Using the knuckle of her hand to move from screen to screen, Felicia now interfaces with multiple pages, with a deep pool of options (approximately 10,000) on her communication device all at once.

“We had to really look at the attitudinal barriers of the people around her,” says Hermann. “What you initially see with Felicia is not what she is actually able to do.” With Felicia now thriving in the sixth grade, Hermann says that her peers are much more accepting than adults. “The kids understand that she’s like anyone else, just with different needs.”

Confident in the decision that she made for her personal situation, Hermann admits that the process to get to this point wasn’t easy. “Felicia was trapped inside her body, so my goal was to get her untrapped.” For the first six years Hermann was forced not to work. “I had a three year old son at the time, and Felicia would come home for a few weeks and go back for a month, come home, and go back again. The first year of her life she spent every holiday in the hospital…I was trying to be super mom, while at the same time learn about this new child.”

Hermann pauses, and adds – “our happy little white picket fence life was totally different all of a sudden.”

Fiercely determined to learn everything possible about community based options for people with disabilities in Virginia, Hermann became an expert. She no longer waited for answers – she found them, and in many cases, created them. Hermann read every publication she could find, attended parent and advocacy conferences, and began researching assistive technology.

Throughout the process she began to familiarize herself with a State that for the past 40 years has unsuccessfully called for a shift from institutions to community supports.  Hermann believed, however, that persons with disabilities have a right to choose to live in the community and that the state has a right and responsibility to commit to a true community-based system.

“Why should my daughter be separated or segregated?” she asked - repeatedly. What Hermann learned was that she was not alone, other citizens in the Commonwealth overwhelmingly agreed. In fact, a recent statewide survey demonstrated that 83% feel that the Commonwealth has a promising opportunity to fully transition to a true community-based system of support for its citizens like Felicia.

Hermann, like many Virginians, regularly joins in outreach and advocacy activities that expand and improve the state’s service systems and promote community integration, person-centered practices, and self-determination. She says that individuals with disabilities of all types and degrees can and do live successfully in communities of their own choice when individually appropriate services and supports are available.