Not Home: A documentary about kids living in nursing facilities is a 90-minute documentary that investigates the history and current trends of the long-term institutionalization of children with developmental disabilities living in U.S. nursing facilities as seen through the lives of four families.

There are more than 10 million U.S. children with a developmental disability. Most parents today reject institutional care as an option for their special needs child. But parents today are becoming more and more overwhelmed, tapped out emotionally, physically and financially and feel they have no place to turn but a nursing home.

Not Home follows four families in an attempt to understand their reasons for institutionalizing their child. The film shows the history of how people with a disability have been treated, the disability rights movement in America, and the healthcare policies that favor institutionalization rather than home and community based care.  U.S. healthcare policies often fund the institutionalization of children with a disability rather than a Medicaid waiver that provides community support, allowing the child to live in a home with a family in the community.

The Not Home documentary focuses on four interweaving stories: Mathew, Qualeigh, Essie Evans and Nola Sayne – a young adult, a child and two parents whose separate lives intersect the through institutionalization of children and young adults with a developmental disability. In between each story are interviews from advocates, activists, elected officials and other parents from across the country facing similar challenges.

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.

Nola Sayne has perhaps traveled Interstate I-85 from Kennesaw, Georgia to Montgomery, Alabama more than anyone. Kennesaw to Montgomery is an 8-hour round trip drive she took once, sometimes twice a month for the last nine years to visit her son Zach who resided in a long-term pediatric nursing facility. The decision to place her son in an institution was not easy. But she could not bare the guilt of breaking her commitment to not forget about him, not pretend that life is better for him away from her love and attention. Ms. Sayne tried to bring Zach back home to Georgia but because he is not a Georgia resident, it was difficult. One obstacle was that his Medicaid funding was tied to Alabama, where he lived.  This situation was a bureaucratic nightmare that Ms. Sayne patiently wading through with the support of her husband and her advocate at the Children’s Freedom Initiative.

Time has run out for some children living in an institution. Zach died in a nursing facility January 2013 while waiting on a Medicaid Waiver that would have provided the support for him to live at home.

Qualeigh (Kwa-lee) spent the first six years of his life living inside an institution.  And in those six years he had never been outside. He lived in a room on the 2^nd floor of a state-run nursing facility along with 30 other children with developmental disabilities.  But Mrs. Martins knew in her heart there was a better life waiting for Qualeigh.  But first she had to coax him into the 2^nd floor elevator in order to get him to go outside.  No easy task.

Qualeigh kicked and screamed but Mrs. Martins didn’t give up on him.  A childhood is an experience most of us take for granted—an experience that can’t be replaced. Qualeigh finally made it into the elevator and outside for the first time in his life. Qualeigh now lives with Mrs. Martins and her family. She fell in love with the little boy and resigned from her teaching position so that she could show him the world outside the walls of that institution.