Families must take the driver’s seat in pediatric care management
CM’s job: Move caregivers toward independence
Children are not miniature adults. Even children with temporary health issues may experience serious developmental delays, and because they cannot take ultimate responsibility for their own care, family participation is essential at every stage of the care management process. "If an adult enters the hospital for a month, or even two, with an acute illness or injury, he or she will still be able to walk and talk when discharged," says Sharon Boyle, RNC, BSN, CCM, program coordinator at The Coordinating Center for Home and Community Care, a nonprofit care management agency in Millersville, MD.
"Even children who are developmentally on target experience developmental delays after even a brief hospitalization," she says. "Many of the children we work with are very medically complex and even technology dependent. Their needs continue throughout their lifetime. It requires a different approach to care management which requires the care manager to progressively move the family into assuming the role of care manager."
Boyle and co-worker Carol Marsiglia, RN, BSN, CCM, program coordinator for The Coordinating Center, reviewed standards of practice for case/care management and found they did an adequate job of establishing a minimum standard of care but did not begin to address the special needs of children with complex medical issues.
"We took all of the existing standards and looked closely at them — like trying to fit a puzzle within a frame," notes Marsiglia. "We found that they simply didn’t address the full range of needs . . . of children who may be functionally dependent on a caregiver their entire lifetime with changing needs at each stage of development."
The case/care management standards that center staff reviewed, including those from the Case Management Society of America in Little Rock, AR, and the National Association of Social Workers in Washington, DC, did not address the need to intervene with children at risk to minimize or prevent developmental delays and health complications, she reports.
"We reviewed every national case/care management standard of practice currently available," Marsiglia says, "and then we developed our own pediatric care management pathway, which focuses on educating families and gradually reducing the family’s dependence on the care manager to the point that the family moves into the care manager’s role."
The desire to support the family in its role as care manager is central to every phase of The Coordinating Center’s care management pathway. "When our program began, we, as professional care managers, took full responsibility for implementing and coordinating the plan of care," notes Boyle. Now, the family receives a copy of the care management pathway during the assessment phase, and right from the beginning we start the process of moving the family into the care manager’s role."
Of course, not all families are ready to assume the role of care manager, agree Marsiglia and Boyle. "Families all begin in a different place in terms of the continuum of willingness and ability to assume care management responsibilities," Marsiglia explains. "Many are so overwhelmed by their child’s current situation and medical needs that they simply can’t take on another role. The pathway is designed so that the care manager helps the family move progressively toward independence. Timing is based on family readiness."
The Coordinating Center’s care management pathway reflects this process of gently but continuously moving the family into the care manager’s role beginning with the assessment phase, Boyle explains. Here is an outline of the eight-stage pathway:
1. Assessment phase. Service providers are identified. The family/primary caregiver recognizes the goal to assume the care manager role. Criteria are established for increasing community supports to decrease dependency on private service providers.
"Families receive a copy of the care management pathway at the first meeting with the care manager," says Boyle. "We carefully explain our role as partners with the family throughout this process."
Make sure home is safe
In addition, the goal of pediatric care management for children with long-term complex needs is for care to take place in the home and community, which requires a careful assessment of the home environment for health and safety issues, notes Boyle.
"It’s very important for the care manager to respect the family’s culture and personal preferences during the assessment," she explains. "We focus only on those issues which may directly impact the health and safety of the child. If there are issues which may impact the child, we address them and find funding for [correcting them], if necessary."
For example, if the child has been sleeping on a mattress on the floor, it may seem inappropriate to the care manager, but it probably does not present a health or safety issue for the child. "We may discuss with the family ways to elevate the mattress to make caring for the child easier for nurses and other care providers, including family caregivers," says Marsiglia.
On the other hand, if the home of a child about to be discharged with a tracheostomy is infested with insects, it should be addressed because insects could crawl into the tracheostomy and place the child at risk. "For every issue we feel must be addressed, we focus the discussion on how it may affect the child’s health," stresses Boyle. "If there’s clutter everywhere in the home, we overlook it, unless the child is coming home from the hospital with a wheelchair. And, even then, we focus on simply clearing a path wide enough for the child to navigate through."
Access to care also is an essential health and safety consideration. "If the family does not have phone service, we ask them to think about how they will call 911 in case of a medical emergency," says Marsiglia. "One solution may be the purchase of a time-limited cell phone that’s only used for emergencies."
Families also need to consider transportation. "What good is it to coordinate appointments if the family can’t get the child to them?" asks Boyle. "We identify available transportation options and then support the family to make the necessary arrangements."
2. Active care management. The family/primary caregiver should be able to identify and access all service providers and describe each provider’s role. "The goal of care management for children with long-term or lifetime needs is to keep the child in the community, and because there are limits on funding for professional caregivers, the family must be trained from the beginning to provide nursing care for the child and not rely too heavily on health care service providers," says Boyle.
"One of the goals of care managers from the beginning of care management is to make sure that family members understand and are trained for all of the child’s daily medical needs, particularly because there may be a limit to nursing resources," she explains.
Sometimes, the care manager also must address this issue with professional nursing staff, adds Marsiglia. "Our goal is to promote family independence from professional service providers. Historically, nurses come in and take charge, and the family becomes dependent on the child’s nurse," she says. "We find it’s often necessary to go to the nursing agency and speak with the supervisor about educating their nurses about promoting this independence."
At this stage, care managers also stress with the family that at least two family members must be well-trained to provide the child’s care. "We may be able to authorize 15 hours of nursing care, but if an ice storm hits, or the agency
is understaffed due to a nursing shortage or a holiday weekend, the family must be able to care for the child," Marsiglia notes.
"It’s the family’s responsibility to provide a totally skilled backup caregiver if the agency can’t fill all of the necessary nursing hours. Aunt Lola may need to be trained to relieve Mom; it’s something we expect the family to decide and take responsibility for," she says.
3. Week one. The care manager reviews the plan of care with the family/caregiver. The primary caregiver actively implements care management tasks as negotiated with care manager.
Moving families into the care manager’s role is a process that takes place over time, explains Boyle. "It’s a process of negotiation between the care manager and the family. If there are 10 interventions which must be completed, the care manager helps the family identify them and then begins the process of negotiating which interventions the family will complete and which interventions the care manager will complete," she says.
Initially, the family may be able to manage only one intervention, but during the next phase of the pathway, it may be able to manage three, Boyle says. "There may be some back and forth over the course of care management. If the child is readmitted to the hospital or another family member becomes ill, the care manager may have to step back in and take on more responsibility until the situation stabilizes."
Consider all available resources
It’s also the care manager’s responsibility to identify other care sources the family has tapped and provide only those skilled services that are necessary, Marsiglia says. "Between the family’s church and the local high school, the child’s nursing needs may already be met 24 hours a day. As care managers, we must always be aware of the cost of the plan. If the child’s needs are adequately met without skilled nursing, we shouldn’t approve it simply because we can."
Similarly, if the child needs nursing care during the school day, the care manager must identify whether there is a school nurse available to address those needs. "Each school district, each school, has different resources available. If there is a school nurse, we can save the resources allocated for nursing care," notes Marsiglia.
4. Month one. The primary caregiver initiates the reorder of supplies according to procedures established by the care manager and the durable medical equipment vendor. The primary caregiver participates in an educational, rehabilitative, or vocational program meeting and communicates with primary nurses and nursing supervisors.
Community resources are available for children that do not exist for adults, note Marsiglia and Boyle. "The care manager introduces the family to these resources and makes the necessary referrals and introductions and then trains the family to step into those education and rehabilitation systems — to attend the necessary meetings and oversee the child’s progress," says Marsiglia. "Many communities have early intervention programs for children with developmental delays. The child’s plan may be enhanced by accessing school-based speech or occupational therapy programs."
An essential part of training the family to move into the care manager’s role is providing questions to ask service providers, notes Boyle. "If the child has the opportunity to attend a field trip with the school, we provide the family with the questions to ask about transportation and access. We train them to call ahead to the aquarium and find out about accessibility. If the child has access into
the building but can’t see more than half of the exhibits, it may not be appropriate for the child
to go with the school on the field trip."
5. Month two. The primary caregiver communicates at least monthly with all service providers and participates in implementing educational, rehabilitative, or vocational goals.
6. Month three. The primary caregiver participates in a multidisciplinary team meeting to review the medical management goals and the plan of care.
Although The Coordinating Center does have contracts with other payers, most of the care managers’ time is spent working with children in the Maryland Medicaid Waiver program. "We hold multidisciplinary meetings for each case at regular intervals to assess the current plan and make any necessary changes for the next six months to a year," explains Marsiglia.
"We invite all members of the team — the care manager, the family, the physician, the specialists, therapists, school representatives," she says. "They may not all come. At the least, the care manager, the physician, and the family must be present. Each team member identifies discipline-specific outcomes. The care manager is the primary liaison between the team members and the family and works to ensure that all of the outcomes are family-centered — it’s the only way to be successful as a pediatric care manager."
When a care manager from The Coordinating Center works with managed care organizations, team meetings aren’t mandated, but the care manager still tries to encourage them, adds Marsiglia. "The care management pathway is easily applied to any payer. We apply it now to any children we provide care management for, even those outside the Medicaid Waiver program."
7. Month six. The primary caregiver participates in a multidisciplinary team meeting to review medical management goals and the treatment plan at appropriate intervals.
8. Professional care management termination. The primary caregiver/family assumes the role of the care manager.
"The underlying philosophy for everything we do as pediatric care managers is to educate families in order to reduce their dependence on us as care managers," stresses Marsiglia. "The family is best suited to be the child’s care manager. Our role is to integrate the responsibilities of the payer with family supports for care management."
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