Coordinating care for special-needs kids


Danielle Braff


Medical home concept shifts burden from parents to doctors When Chicagoan Melissa Parages' daughter Carolyne was 6 months old, Parages realized there was a problem. Carolyne wasn't gaining weight and wasn't digesting her food. She took Carolyne to a Park Ridge hospital, where she was seen by a rotating team of 40 doctors who suggested various remedies and medications for Carolyne, who was diagnosed with cystic fibrosis.

"That's not going to work for me," Parages told the doctors at that time. "I need to see the same doctor all the time. I need somebody that knows her and knows her condition. I need somebody with a little extra."

When Carolyne was 4 years old, Parages moved her to West Suburban Hospital in Oak Park, where she became a patient of Dr. Marian Sassetti-Kent, who practices medicine with a medical home philosophy-a commitment to comprehensive care that helps parents get through the labyrinth of doctors and procedures that a special needs child will require.

A doctor finds a home Sassetti-Kent, also the mother of a 13-year-old who has a range of special needs, says she understands how difficult it is for parents. Even though she is a doctor, Sassetti-Kent says she became confused and frantic with her own son.

"You feel like a train hit you," she says. "I became his mom and the coordinator. It's excruciating because you feel like you have the weight of the world on your shoulders. You have the sense of, ‘Am I doing it right, am I doing enough?' "

She says that if her son's doctor was trained as a medical home practitioner, then the doctor would have told her to relax and allow the physician to do the arranging and the worrying.

When Sassetti-Kent's friend told her about the concept of a medical home, she was immediately interested, both from the standpoint of a mother who has a disabled son and as a doctor.

The medical home gives doctors the confidence to tell families when they need to take a step back because the extra time these doctors spend studying the patient and speaking with the sub-specialists gives them authority.

Rather than running from one patient to the next, the medical home doctors spend extra time with each patient's records.

They can afford the time because in a medical home, doctors are paid extra to take the time to make the calls and discuss care plans. They also make sure all the doctors are aware of patient and family needs and what steps are needed to treat the child, says Dr. Charles Onufer, director of the University of Illinois at Chicago's Division of Specialized Care for Children.

Doctors are not traditionally compensated for the dozens of calls needed to arrange subspecialist care for patients. As a result, many doctors may slack on the referrals, or may even give misleading advice to parents, says Onufer. But his division, which offers services to more than 20,000 Illinois families, uses a portion of the approximately $17 million it receives in federal and state funds for children with disabilities to help doctors take the extra time.

Bringing order through home "Before the medical home, Carolyne's shot records were all out of order and she missed an immunization because her records got displaced," Parages says. "Now, everything is in one place. She's been a lot less sick since she had this situation."

The medical home was created in 1965, and it originally described a doctor's office that acted as a single repository for a patient's complete medical information. The term evolved from just a place to the doctor-patient relationship where the doctor not only keeps track of the medical records, but also arranges and supervises all medical activity that the child will encounter.

It seems a bit strange-because it seems what doctors should be doing to ensure the best care for a child. But it doesn't happen. While most medical practices do coordinate care and give referrals, medical homes are trying to educate all doctors so that, ideally, all primary care doctors will be able to spend the time needed and receive the desired education to fulfill all patient needs.

Chicago Shriners Hospitals for Children is hosting a conference Nov. 6 for physicians and parents about medical homes.

"Ideally, what we want is medical professionals who are better trained in the business in securing appropriate treatment in subspecialists, and finding ways to integrate the information and make it as easy as possible for the family," says Elise Wachspress, director of public relations for Shriners.

"The initiative is trying to find an easy, low-cost way for these people to be trained and brought up to speed with these issues. If you [the doctor] are arranging care for a child and need  care from an orthopedic surgeon and a neurologist, you can call them and bill us," Onufer says. "Then you can call back to the family and say, ‘We've arranged everything.' "

The end results, Onufer says, are happier, healthier children and parents. The parents are able to relax and understand the doctor is taking the time needed to ensure the child sees the correct specialists at the correct time. As a result, the child usually becomes healthier, Onufer says.

"They have a sense of trust in that physician," Onufer says. "It's what you and I and every family member wants that relationship to be with their primary care physician." 


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