Cerebral palsy has left Jonathan Chiccino's body crippled and contorted.
But it hasn't left a scratch on his keen intellect. The 32-year-old Temple University graduate with a 3.6 grade point average is setting his sights on law school. The barrister-to-be wants to practice either family or divorce law.
Before Chiccino can join the bar, he must first clear a bar - the law school admissions test. It won't be easy. He'll need a waiver for special accommodations including extended time to complete the exam. But Chiccino isn't worried. He has something going for him. Well, actually, someone. Her name is Mona Yudkoff.
Yudkoff is a registered nurse and owner of BalaCare Nursing Solutions, which specializes in life-care planning. Nurse life planners are typically RNs who help navigate the long-term medical care and needs of people with disabilities, chronic illnesses, catastrophic injuries to the brain or spine, or burns.
But with more than a few dozen local practitioners, most people, including nurses and families who could use their services, have never heard of the concentration.
"We're trying to increase the knowledge and expose more nurses to the concept of life-care planning," said Joan Schofield, president of the American Association of Nurse Life Care Planners, which offers a list of practitioners at www.aanlcp.org/. "There isn't a whole lot of information out there about the profession."
Planners earn from $150 to $300 an hour. And the average age is 50, according to Yudkoff, who is 64. She knows her business and the profession desperately need an infusion of new blood. But Yudkoff has been hard-pressed to find nurses who know about or are interested in the profession.
"I'm having an awful time finding young nurses who know what I do or want to come to work for me," Yudkoff said. "It is lucrative, it's fun, it's exciting, and creative. You have to be smart and use your education and skills."
Yudkoff found her calling 25 years ago after spending a decade as a floor nurse at Children's Hospital of Philadelphia. Back then, doctors dominated the life-planning field, especially when it came to testifying in court about a patient's long-term financial needs. Then about 15 years ago, things started changing.
"There has been a shift in understanding that rehabilitation nurses in particular understand about the long-term care needs of patients, and understand the costs probably better than doctors, because we look at the whole patient," Yudkoff said. "We look at how to coordinate the whole kit and caboodle."
Yudkoff's career is two-sided. On the one side are the lawyers who hire her to explain to juries the most likely scenario for their client's long-term care and needs. Say the client needs a wheelchair. Yudkoff estimates how many times over the course of the patient's life it will have to be replaced. She does the same for every aspect of every need.
"Then I can take the person's life expectancy and put a dollar figure on it so that we can say this patient is going to need $2 million to live the rest of his life," said Yudkoff, who holds a bevy of nursing certifications.
The other side of her job, case management, essentially applies the court settlement to the person.
"A case manager uses all the critical-thinking skills that an NLP does," Schofield said. "But then we transfer it and have to have the additional knowledge in terms of if you have this injury what is going to happen over your lifespan? What do we need to take into account as a person ages with their particular disability? What does the research show in terms of how much increased care they will need? How will their equipment needs change?"
Insurers and hospitals also have case managers and nurse life planners. But their loyalty is to their employers, not patients. Yudkoff is hired by families and paid through trust funds, estate plans, or by a guardian or family member.
"If I am an independent case manager, I can say we need something else or something isn't working so let's get a second opinion," she said. "I have the flexibility because I don't have any loyalty to a vendor or provider or health-care payer. I can help the client get what they need."
Yudkoff was hired by Chiccino's family when he was 12 years old. Since then, she has been his guiding hand researching, recommending, navigating, and negotiating many of his most important health and life decisions.
"She is a motivator, someone who helps me with my goals," said Chiccino, who lives with his uncle, Irv Wenitsky, in Richboro. "She is actually a friend of the family." Chiccino said when Yudkoff came to see him, "I didn't feel like it was a professional situation. It was like someone was coming over to visit."
And why not? It was Yudkoff who located a surgeon willing to do a full back fusion on Chiccino. She worked with Council Rock School District officials to develop his individual education program, and bought his first voice-activated devices. And now she is papering the way for Chiccino to fulfill his dream of becoming a lawyer.
"I'm surprised when I think of all the advantages she has given Jonathan," said Wenitsky. "Whenever we need something, to find out about a new wheelchair, or service or doctor, we call her office and they research it and give us the options. She always seems to succeed in fulfilling our needs."
Yudkoff's team recently helped Chiccino fulfill another need by finding an Easy Stand. The device supports him so he can stand upright.
"I just love the fact that I can stand up again," Chiccino said as the sling he was seated in was hoisted up. "Just standing up like this is great."
Standing off to the side, Yudkoff smiled.