A Place to Call Home


A Place to Call Home

Coordinating Care for Medically Fragile Children

By Francie Scott

Sometimes Mae Moore didn’t know which doctor to call when her son, A.J., suffered a medical crisis. The little boy, born with spina bifida and Arnold-Chiari malformation, also suffered from tracheal malacia and was prone to aspiration. While A.J.’s primary symptom could be respiratory failure, the problem may have stemmed from his central nervous system impairment. Should she call the pediatrician, the pulmonologist or the neurologist?

Medical Home 2

“I needed a captain of the ship,” explained Moore, who lives in Mesa, Ariz. “I needed someone to steer everyone in the right direction, someone who wouldn’t overlook the little things.”


Members of the American Academy of Pediatrics developed the concept of “the medical home” for families like the Moores. Based primarily in pediatrician’s offices, the Academy defines the medical home as “the point of access to all needed health services.” The doctor at the head of a medical home serves as a gatekeeper and coordinator, helping families find the medical specialists and resources they need to take care of their children.

“By medical home, we mean continuity of care,” explained Liz Osterhus, director of the Medical Home program for the American Academy of Pediatrics in Elk Grove, Ill. “Instead of getting their care piecemeal, someone has all their records in one place.”

Children’s hospitals also may provide a medical home for fragile, complex patients. This happens informally at Children’s Hospital of Philadelphia, where pediatric intensivist Andrew Costarino, MD, and John Downes, MD, an anesthesiologist, often provide primary care for ventilator patients. Mark Magnusson, MD, also runs a clinic for medically fragile children, including some on ventilators, and he serves as medical director of the spina bifida program.

“We make sure the care we are giving coordinates with the care they are receiving from other physicians,” Dr. Magnusson explains.

Children with conditions like spina bifida need primary care, ancillary care and they may well need specialist care. Dr. Costarino noted that ventilator-dependent children in Pennsylvania link up with a state program, but many still come to him for their primary and specialist care. He sometimes sets up meetings with specialists to ensure everyone is on the same page regarding the child’s care.

Georgette Kavka Kandrack, RN, describes herself as “a link to the doctors,” explaining that the medical home “is a side job” for these critical care physicians. She stresses, “We do not mean to take the place of the pediatrician,” but adds, “Many of these kids are so very complex, pediatricians are uncomfortable dealing with them.”


Moore’s search for a medical home to help her care for A.J. took her to David Hirsch, MD, of Phoenix Pediatrics, whose practice includes 2,200 medically complex children among his 16,000 patients. Known for providing a comprehensive medical home, Dr. Hirsch and his colleagues have negotiated with managed care companies for higher fees to offset the costs of longer consultations, extra paperwork and additional staff needed to keep these children stable. Such employees include care coordinators with a nursing background, a home nurse coordinator and office personnel.

“I learned over the years it is probably best to do this in-house,” Dr. Hirsch told clinicians gathered in Philadelphia March 3-5 for a conference devoted to medically complex and technology-dependent children sponsored by Ken-Crest Services. “We have our own case managers and care coordinators. It’s expensive…(but) they are familiar with the child and have dealt with his family on many occasions.”

By monitoring children fastidiously and providing the care and resources they need, Dr. Hirsch showed that his hospitalization rate of 342 days per 1,000 medically fragile children was less than half the national average of 691 days per 1,000 children. He also posted lower hospitalization rates for typical patients, at 67 days per 1,000 children compared to the national average of 94 hospital days per 1,000 children.

Although the support services carry a price tag, costs are significantly lower than hospital care, Dr. Hirsch noted. Because medically fragile children have many more health problems than typical children, Dr. Hirsch showed they needed an average of 18 times the number of referrals and authorizations and longer consultation times in the doctor’s office, depending on the severity of the patient’s condition.

“If I am seeing a special needs child, even for an earache, at a minimum we are giving them 24 minutes,” he explained. “If they come in with a more complicated problem, they could get up to an hour (of the doctor’s time).”

Directors of a medical home also invest time in meetings with other caregivers and officials involved with the children, such as specialists, ancillary service providers, special education teachers and school board officials. In addition, Dr. Hirsch develops relationships with school nurses and assists patients and their families with grievances if benefits are denied.

“It takes a lot of time for a lot of people to maintain high quality medical care while minimizing cost,” he explained.


The doctor encouraged clinicians to document their experience when negotiating with managed care companies for additional reimbursement to cover the cost of caring for medically complex children. For example, Dr. Hirsch ranks his patients with a “severity number” that match his billing rates.

If children have more than one diagnosis, physician’s offices need to use the right codes to bill for Medicaid reimbursement. Other third-party payers need details of chronic diagnoses and acute diagnoses.

“Unless you get reimbursed appropriately, you are not going to be able to take care of them,” Dr. Hirsch told his Philadelphia audience.

Following guidelines developed by the American Academy of Pediatrics, Dr. Hirsch focuses on providing continuous, comprehensive, family-centered, compassionate, coordinated, culturally competent care.

“I think I am probably one of the few people in the whole country who has actually gotten a managed care company to pay for a consult with a medicine man,” he said with a smile.

“It worked,” Dr. Hirsch added, noting that “the whole point is recognition of what is important in the patient’s culture.”

The doctors at Children’s Hospital say they do not get additional reimbursement for the work they do coordinating care for medically complex patients.

“Billing for home management has traditionally been difficult. As a result, we provide it gratis,” Dr. Costarino says, noting that sometimes reimbursement for in-patient care offsets some of the expenses.


Moore, whose son A.J. died last Christmas, found Dr. Hirsch and his team took care of the details and the big picture relating to her son’s care.

“They took this huge load off my shoulders,” she said.

Although Moore lived 30 miles, or “45 minutes in traffic,” from Dr. Hirsch’s office, she says, “I would go that far. He made my life so much easier.”

Before A.J. had a medical home, Moore was advised to call 911 when A.J.’s symptoms grew complex. His specialists never talked to each other, and Moore often felt overwhelmed by her son’s medical problems. The little boy’s nurses refused to give drugs like epinephrine without direct orders, even though A.J. occasionally had anaphylactic reactions and Moore had the medication on hand. Her medical home provided a point of reference for all her questions and concerns.

“They were available to me any time…if I called the service, someone would call me back…even if we were in the hospital and something wasn’t right, he (Dr. Hirsch) would come in and get everyone to sit down and talk, ” Moore said.

Speaking to caregivers in Philadelphia, Dr. Hirsch explains, “The bottom line is, care has to be continuous. It has to be coordinated. Somebody has to sit down and organize it.”

The medical home provides resources for families and their medically fragile children, including lists of charitable organizations, sources of used medical equipment and helpful school officials. Dr. Hirsch and his staff also work with the federal Maternal and Child Health Bureau.

“The whole idea is have everything running smoothly,” he explained.

Dr. Hirsch stressed the importance of incorporating parents as partners, noting, “Parents are experts on their own children. They know more about their children than any physician. They know when something is wrong (although) they may not be able to tell you exactly what it is.”

Moore appreciated this approach, explaining that Dr. Hirsch “looks at your child the way you look at your child.”

Dr. Hirsch and his colleagues at Arizona State University received a Medical Home grant to develop strategies to improve the partnership between parents and professionals in the medical home.

Medically complex children frequently need social services not directly related to their health status. Dr. Magnusson at Children’s Hospital of Philadelphia recalls a 12-year-old ventilator patient with anterior horn cell disease who lived with his mother and his grandmother. While the mother devoted a lot of attention to her son, the grandmother proved difficult to live with and could obstruct care. His colleague, Dr. Downes, collaborated with a social worker to place the boy and his mother in public housing, and the boy’s behavior immediately improved.

Under the medical home model, medically fragile teen-agers and young adults often encounter difficulty transitioning to adult care, and many stay with their pediatricians and children’s hospitals. Dr. Hirsch says if he sees a patient by age 23, he will take care of that patient throughout adulthood.

Parents like Moore praise the value of the care medical homes provide medically fragile children.

“I think it made a huge difference to our family,” she explains.

After years of feeling “I had this complicated child and was expecting the pediatrician to go outside his comfort zone,” Moore found a kindred spirit in Dr. Hirsch.

Francie Scott is senior editor of ADVANCE.

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