Families / Stuart Kessler

Megan Holl | Stuart Kessler

Caregiver Kim Ellis ties Stuart's shoes.

Stuart Kessler was born autistic in 1957 when the medical community knew very little about his condition. He was self-abusive as a baby. As a teenager he hurt himself and others so much that he was often held in five-point restraints. Several times, his violent acts toward others resulted in being jailed or locked in state hospitals. While in institutions, Stuart’s physical abuse against himself and others became even more pronounced.

His parents, Larry Kessler and Marsha Desso, fought the state for his release and won. Once released, they cared for all his needs at home.

Stuart and his parents moved to Gainesville, Florida in 1999. Stuart lives in a mobile home on the same lot of land as their house.

Stuart needs assistance with every aspect of personal care and cannot walk without being help in a gait belt. He cannot be left alone at anytime.

In addition to autism, Stuart has progressive leukodystrophy, which is degenerating his brain and impairing his ability to move his left arm and leg. He also has sleep apnea and has lost his ability to speak clearly.

His parents cannot provide that level of care. They hired what help they could but were often left with untrained and unreliable people.

In 2001 when Mrs. Desso was diagnosed with thyroid cancer and Florida responded by funding 24/7 at-home care for Stuart through its Home and Community Based Waiver.

Primary caregiver Kim Ellis, mother of six and grandmother of six, came into their lives.

At the time of filming, Stuart was 47 and Kim Ellis had been working with him for more than four years. Despite his autism and degenerative brain disorder, with Kim’s help Stuart became calm and happy.

The stability and consistency in which Stuart receives care has profoundly changed his behaviors. He has become more socially aware, he enjoys trips into the community, and he even monitors and engages in conversations.

Stuart benefits tremendously from Florida’s Medicaid Waiver but as his physical condition has gotten worse, Florida has reduced his care budget. Now, Stuart’s elderly parents worry that more cuts will jeopardize his life and theirs. “We have to sweat it out every year,” says Mrs. Desso.

Megan Holl | Stuart Kessler