Program coordinates care, resources for medically complex children
Special needs case managers are liaison between providers
A typical day for Deb Jablonski, RN, CCM, may include going to visit a specialist with the family of a medically complex child; working with the inpatient case managers and treatment team at the hospital to coordinate the care of a hospitalized child; talking with a school therapist about the care a child needs; or communicating with the child’s pediatrician.
Jablonski is a special needs case manager at Children’s Hospital of Wisconsin (CHW), a 222-bed tertiary care facility with multiple specialty clinics. The hospital is a teaching hospital affiliated with Medical College of Wisconsin in Milwaukee.
The hospital began a case management program several years ago to help families coordinate the care of medically complex, chronically ill children and act as a liaison between the multiple specialists who treat the children, the school, the child’s pediatrician, the hospital treatment team, and any community agencies that serve the family.
Dealing with lifelong problems
"We feel this program is really important because this is a population of children with potential lifelong problems. Historically, there haven’t been a lot of resources to help parents, and this is not a population that’s going to go away. We try to help them through the first years," she says.
The special needs patients range in age from 0 to 21 years and may have genetic conditions or acquired birth injuries. Many have neurodegenerative disorders that have left them with multiple disabilities.
They typically have feeding and nutritional issues, as well as neurology and pulmonary issues. Often, they see rehabilitation and orthopedic specialists.
"We don’t manage a lot of kids with specific diseases. For instance, children with cystic fibrosis are medically complex and have multiple problems, but the pulmonary clinic can adequately address all their needs," she says.
The case management program began in 1998 when the hospital hired a case manager to handle a small population of special needs patients covered by a contract, says Jeanne Musolf, MS, RN, CCM, manager of case management for CHW.
When the program began, the children were managed by many different people with expertise in their areas. For instance, the rheumatology patients were handled by a rheumatology advance practice nurse.
"We had 17 staff members providing case management services, each handling a few cases. In 2001, we hired Deb Jablonski as the first dedicated case manager for this population," Musolf says.
"The program has evolved to include three full-time special needs case managers, an advance practice nurse, and a special needs program medical director — John Gordon, [MD, FAAP]," she explains. "We are becoming the experts on kids who cross multiple disciplines."
The case managers have an average caseload of between 25 and 30 patients.
Coordination of care
The special needs case managers coordinate care among providers, help the family get the services they need, and provide the communications link between the pediatricians, the hospital, and the schools, so everybody is aware of what is going on with the child.
"More than anything, we provide a single point of contact at the hospital for families and doctors, so they have to call only one person to get an answer," Jablonski says.
Many of the families who come into the program have been struggling on their own for some time, trying to negotiate the health care maze.
"The issue for our families is that they have very clinically ill children; and they’re not only trying to be the parent, they need to be to be the caregiver, financial person, home health nurse — all those roles. It can be incredibly overwhelming," Jablonski says.
When a special needs patient is admitted to the hospital, his or her special needs case manager acts as a liaison between community providers and inpatient care.
Special needs case managers make sure the health care team has information about issues at home, challenges with transportation, psychosocial issues, as well as medical concerns.
The information is helpful to the inpatient case managers who are handling discharge planning and arranging for home care for the young patients.
"These children have multiple medications, health care providers, and ongoing issues. The special needs case managers make sure the inpatient staff and physician have that information," she says. The case managers write a clinical summary, updating it periodically for the family, hospital staff, and community providers.
"The summary is really helpful for the doctors and other health care providers because the children have complex medical histories and frequent hospitalization. It keeps the parents from having to repeat the child’s information over and over," Musolf says.
In the past year, the special needs case managers have partnered with Gordon, the medical director, to coordinate care for the extremely medically complex children.
"Dr. Gordon also provides clinical summaries for the children and families he works with and is integral to bringing the health care team together to formulate medical plans of care," Musolf says.
One of the goals of the special needs program is to partner with community pediatricians in the care of their medically complex patients. They provide the pediatricians with clinical summaries and information on treatment decisions following a child’s visit to a specialist. Depending on the situation, they communicate with the pediatricians by telephone or e-mail.
The case managers often go with the family to CHW specialists or the pediatrician, or will accompany the family if the child is referred to a health care provider outside the hospital system.
"The families find it very helpful to have a communications link and a facilitator to assist them with assuring coordination between multiple specialists," Jablonski says.
Case managers work with the schools to make sure the children are getting what they need and to keep the school therapists apprised of what is going on with the child.
"Once a child enters the school system, outside therapy may stop and the issue becomes determining what is an educational need and what is a medical need. By attending the educational planning meeting, we are able to advocate for needed services," Jablonski says.
A typical day for Deb Jablonski, RN, CCM, may include going to visit a specialist with the family of a medically complex child; working with the inpatient case managers and treatment team at the hospital to coordinate the care of a hospitalized child; talking with a school therapist about the care a child needs; or communicating with the childs pediatrician.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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