Mathew is a well-mannered, 21-year old young man who was placed in a nursing home by his mother.  He whispers to speak—for words to pass through his lips, it takes all of his energy.  You must lean in to hear him because each word is calculated.  Mathew has Leigh’s disease; a neurological condition that weakens his muscles.  Yet, Mathew is like any other young man of his age. He loves the Georgia Bulldogs, playing video games, going to the movies, listening to country music and hanging out with friends.

In meetings with the Children’s Freedom Initiative, Mathew clearly communicated his desire to leave the nursing home but it required a Medicaid waiver to move into a home in the community.  Just when Mathew was approved for his waiver he was hospitalized with Pneumonia, a common threat to residents living in congregate care. Mathew recuperated and managed to move out.  He now lives with his caregiver, travels and regularly plays video games with the guys in his neighborhood.

Essie Evans is familiar with long rides.  It took her 8-hours, back and forth on Interstate 85, just to take her son Cornelius to and from his pediatrician appointments. Cornelius was a 14-year-old boy with multiple and severe developmental disabilities that require 24-hour a day, one-on-one care. When Ms. Evans wasn’t able to physically or financially provide continuous care for her son, she made one of the most difficult decisions a mother can make.

Ms. Evans placed Cornelius in a nursing facility that promised around the clock medical attention, physical therapy and an education program designed to help her son. Unfortunately, her son suffered through several illnesses and infections while in the facility.  Ms. Evans even suspected abuse and decided to bring Cornelius back home, despite the lack of medical support (nursing aides, blood draws, therapeutic mattress, and a Hoyer lift) prescribed by his pediatrician.

Ms. Evans gave her son unconditional love, care, and attention like any mother would in her position, yet it was difficult, exhausting and almost unbearable. Her small tight knit family barely held it together with the transporting, feeding, bathing, and turning of Cornelius every two hours to prevent the growth of bed sores.  His pain was her pain. But the Evans Family are not isolated in their struggle.

Cornelius died on July 2013 while in respite care. Although he won a lawsuit against the state of Georgia he never received in-home nursing care.