Disabled Ocean City Woman Lacking Care Due To State Funding, Family Says

OCEAN CITY, NJ — When Caroline Bickel was just eight-years-old, she was diagnosed with epilepsy in the context of cortical dysplasia.

The condition has left her highly susceptible to chronic seizures and developmental disabilities, causing life-threatening seizures her entire life and developing secondary disabilities like autism that require extra care.

Bickel, an Ocean City resident, often experiences her seizures in clusters, which risks physical injury as well as setting off a domino effect in the days following.

She is able to happily live at home with her parents, though, thanks to the in-home nursing services Bickel has received since 2012 through the state's private duty nursing (PDN) program.

Bickel is medically authorized to receive 84 hours per week of PDN services and her mother, Fran, says that it has allowed her daughter to have a semblance of normal life she would be unable to experience in a long-term care facility.

"Caroline requires a lot of social interaction. She's not someone you can just put a game or activity in front of her and think that will keep her satisfied. Placing her in a nursing home would not only be detrimental to her quality of life and well being–but would be more costly to the state," Fran Bickel said. "She requires constant skilled nursing oversight and intervention, which she can receive at home, where she can live with her family and still get the one-on-one skilled nursing care she needs. And even more, our home care nurses give her the ability to participate in day programs, including pre-vocational training, and play sports like any other girl her age."

But this is at risk.

According to the family, Bickel is only getting one-third of her approved PDN service hours, which Fran Bickel and her husband have struggled with for years.

This is due to a lack of PDN funding, which creates a home care nurse shortage. The lack of funding makes a wage gap for home care nurses, who are in turn attracted to nursing positions in hospitals or other facilities that offer better wages. And particularly in Ocean City, home care nurses are leaving the profession entirely in the summer months to earn a more competitive wage flipping week-long rental units and waiting tables.

This creates a "revolving door" of home care nurses entering the industry and leaving when a better-paying job becomes available - putting the lives of individuals like Bickel at risk.

These inconsistencies have even landed Bickel in the emergency room, her family said.

"Caroline’s care requires so much more than a typical hospital patient. Because of the severity and unpredictability of the seizures, her nurses must be highly trained and qualified to react entirely on their own to keep her safe and know how to handle the aftermath," Fran Bickel explained. "They have to have the skills and continued understanding of Caroline’s signs and symptoms–so the continuity of care is important. A ‘revolving door of nurses’ created by the home nursing shortage puts her in danger."

When they can't find care, it's Fran Bickel and her 76-year-old husband who have to step up.

The family is calling for legislative action to increase state funding for the PDN program so that others like the Bickels can keep their loved ones safe, healthy and at home.