DECATUR - When Tina Carter's 5-year-old son Ryan awakens in the night with a high fever, she rarely hesitates to call his primary physician, regardless of the time.

Carter of Boody has more to worry about than the average mother.

Ryan was born with epilepsy, spastic quadriplegia cerebral palsy. The muscles of all four limbs are affected by stiffness, as often are the muscles controlling his mouth and tongue, and several other health conditions resulting from birth complications.

"I never know if he's running a fever because his brain is acting up or if he's really sick, or what else it could be," Carter said.

Fortunately, Ryan and his family have formed a strong relationship with his physician, Dr. Samir Patel of Decatur, which puts Patel at the center of every aspect of Ryan's care.

Patel is one of many doctors who has adopted the growing concept of Medical Home. Under the concept, the physician coordinates all of the child's care and works with other specialists and the child's school to create a health plan.

The concept of Medical Home was established in 1967 by the American Academy of Pediatrics, said Dr. Charles Onufer, director of the Division of Specialized Care for Children in Springfield, an agency under the University of Illinois at Chicago. Recently, the Maternal Child Health Bureau joined with the American Academy of Pediatrics and prompted every state to look at how to promote Medical Home.

"The goal is to improve the quality of health care for children with special needs in a primary care setting," Onufer said. "Everyone should know what's happening with the child, so there's not a duplication of services."

Ryan's well-being always is a priority for Patel, Carter said. She and her husband, Russell, are able to reach him if anything changes with Ryan's health, including those simple fevers.

"He basically reassures me and tells what I need to do. He decides if (Ryan) needs to be seen right away or if we can go in the next morning," Carter said. "He always calls into the emergency room first to let them know we're coming and then meets us up there."

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In July 2004, the Illinois Chapter of the American Academy of Pediatrics was awarded a four-year, $1 million federal grant to spread the Medical Home concept. The grant, called the Illinois Medical Home Project, was divided into four phases.

There were six practices involved in the first phase of the Medical Home grant, and there are 10 practices involved in the second phase, which began July 1. Each "quality improvement" team from the first six practices was composed of a lead physician, a facilitator from the Division of Specialized Care for Children and at least two families with special-needs children.

The reaction from the families in the first phase has been positive, Onufer said.

"They feel like they have an equal voice," he said. "We are bringing forth priorities from the parents' perspective and identifying what changes should be made."

Dr. Edward Pont, president of the Illinois Chapter of the American Academy of Pediatrics, said he became interested in the concept of Medical Home several years ago. His practice, based in Elmhurst, is now becoming involved with the second phase of the grant.

"It's always been something of interest to me. There are so many places people can receive care and advice - some good, some not so good," he said. "We've always tried to make our practice a one-stop shop for parents. When the opportunity to participate came up, we got really excited."

A practice involved in Medical Home rises to the "upper tier" in all aspects of health care, Pont said.

"You revamp your entire practice's approach," he said. "When you become more amenable to children with special-health care needs, you can't help but make your practice amenable to all children. The more coordinated things are, the better for everyone."

Kathy Sanabria, director of the Illinois Medical Home Project, also has seen how efficient and accommodating Medical Home can be. Sanabria's 8-year-old daughter, Emily, was born with tracheoesophageal fistula, which is an abnormal connection between the esophagus and the trachea, and other birth defects.

"I got her involved in early intervention," Sanabria said. "Since I already knew about Medical Home, I was able to utilize those resources for her. A lot of families don't have the background that I had and didn't get the results I got with my daughter."

One unique aspect of Medical Home is that all of the practices involved in the grant are able to share their experiences and assist each other in problems they might be having.

"It gives them the opportunity to meet and network. They share examples of changes they've made and how they've overcome problems they've faced," Onufer said.

Although the practices now participating in the grant are from upstate Illinois, Sanabria said the project is working to recruit more practices across the entire state. The directors of the Medical Home project hope that all special-needs children will have a Medical Home provider in Illinois by 2010.

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Pont said he believes the reduction of office time is the most important savings for doctors and families.

"It helps the efficiency of the office; the fewer surprises in the schedule, the better," he said. "We'll be able to develop a system to flag that kid and make sure they receive the time they need. It just makes sense."

Carter estimated that Ryan visits Patel every other month, depending on Ryan's needs. Patel spends as much time as the family needs during these checkups, Carter said.

"We talk about what's going on with Ryan and what's going on with us," she said. "It's not a rushed visit. He takes the time to figure out how everyone is doing."

Carter said she recognizes how much more challenging her life would be without her family's strong relationship with Patel.

"I've tried in the past to call specialists myself, but all they want is referrals," she said. "Dr. Patel also talks to other physicians over the phone, and he can explain what's going on with Ryan better than I can.

"I couldn't express how important (Medical Home) is. He just makes it so much easier. It would be a real struggle for me if I didn't have him there."

Courtney Klemm can be reached at cklemm@herald-review.com or 421-6968.