CARE MANAGEMENT FOR CHILDREN WHO ARE MEDICALLY FRAGILE/TECHNOLOGY-DEPENDENT

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CATHY C. LEWIS, M.S.N., R.N. ANN MFORD-WINSTON,M. S. N., R.N. MARICE BILLY-KORNAS, M.S.N., R.N. MARGARETE D. MCCAUSTLAND, M.S.N., R.N.C. C. PENNY TACHMM, M.S.N., R.N. Michigan Deparmtent of Public Health, Children’s Special Health Care Services

Care management is a nursing role that has received more attention over the past decade as the number of children with special health-care needs has increased. The particular role of the specialized care manager within the Michigan Department of Public Health is described in the following article. The purpose is to highlight how the role emerged from a philosophy of care and how families receive the care management services. Future challenges for the state-supported role of care manager are described.

The growing number of medically fragile/technology-dependentchildren residing in pecllatric intensive care units around the country has led, over the past decade, to a close examination of the high cost of care and detrimental effects of prolonged hospitalization for this population. The result has been a shift in the location for long-term care from hospital to home settings for children with a variety of complex care needs. Experience in caring for these children in home environments has revealed numerous benefits, including improvements in their physical function, enhancement of motor and social development, return of control of care for the children to their parents, facilitation of family cohesion and function, and reduced costs compared to inpatient care (Aday, Wegener, Anderson, & Aitken, 1989; Burr, Guyer, Todres, Abrams, & Chiodo, 1983; Donar, 1988). However, significant negative effects and stress for families evolved from the change of care to the home, including continuous care demands, loss of privacy, alteration in parental roles, lack of adequate support, and financial burdens not borne by public or private payors (Aday et al., 1989; Feinberg, 1985). To facilitate a successful transition to a home care setting, a comprehensive program of care management that begins with discharge planIssues in Comprehensive Pediatric Nursing, 15:73-91, 1992 Copyright 0 1992 Tqvlor & Francis 01460862/92 $10.00 + .OO

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ning and extends beyond discharge is required. In this manner. the benefits of home care can be accentuated while reducing the stress on the family and the cost of care. In 1988, Children’s Special Health Care Services (CSHCS), a division of the Michigan Department of Public Health, developed and implemented the Specialized Home Care Program (SHCP) in response to the particular needs of medically fragile/technology-dependentchildren and their families. The SHCP is a state and federally funded program based on a commitment to provide family-centered, community-based, coordinated care to this medically fragde population. The program provides comprehensive, individualized care management through the role of the specialized care manager (SCM). The SHCP also provides coverage of medical care and follow-up, skilled nursing visits, hourly nursing care, and medical equipment and supplies. In addition, the program provides a direct link to the community through the local health departments by means of the locally based services component of CSHCS (see Numinen, Haas, Yaroch, & Fralick, 1993, for specifics about the program).

PHILOSOPHY OF CARE Optimal care for the child who is medically fragile or technology dependent is contingent on the transfer of the child from the hospital to the most nurturing environment, usually the natural family’s home or a foster home, while maintaining the child’s medical and social stability in that setting. Successful home care depends on the family’s commitment and ability to meet the demands of their child’s care at home and on the provision of adequate support and resources to assist them in providing that care. The family-centered, community-based, coordinated care approach provides a framework for the development of a system of supported care for children in home settings. The focus of the SHCP is the family unit. The family, natural or foster, is the constant in each child’s life, with each family unit possessing unique strengths and needs. This philosophy is reflected in the care management approach to these children and their families. The goals of SHCP care management are as follows: (a) to recognize the specialized care needs and strength of the child and the family unit; (b) to facilitate and support the child’s optimal physical function, growth, and development in the most appropriate family and community setting; (c) to promote optimal family function in response to the child care demands; and (d) to empower the family to direct and manage the care of their own child to the greatest extent possible. The role of the specialized care manager within the SHCP is to implement the family-centered,

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community-based, coordinated care approach in planning and maintaining home care for medically fragile/technology-dependentchildren.

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REVIEW OF THE LITERATURE The need for carefully planned and coordinated support services in the home care of medically fragile/technology-dependentchildren is well documented. Wong (1991) emphasizes that comprehensive discharge planning must look at the needs of the whole family so that home care of the affected child can be a positive experience for other family members. Donar (1988) stresses the need for a comprehensive program that includes careful, detailed discharge planning and the provision of adequate community support to assist parents with the demands of complex care. She cites the need both for case management and for assisting parents to learn to handle the management of their child’s care. Other authors (Feinberg, 1985; Vaughn, Snarski, & Goldberg, 1989) concur that the need for case management services continues after discharge. Feinberg (1985) states further that the need is for independent, nonhospital-affiliated case management. Case management and care coordination services are being used increasingly as a means to provide cost-effective, coordinated care to select groups of individuals. Although many case management models exist, all typically have a common factor: there is a single health-care professional who is responsible for managing the coordinated health care for an individual or group over time (Rogers, Riordan, & Swindle, 1991). Based on the integrated ideas and roles of the various case management models, the key elements that comprise the case management framework are: (a) assessment of the patient and family needs for resources and support in all health spheres, (b) development and selection of suitable resources and support to promote or sustain health status goals, (c) monitoring of patient health and medical regimens, and (d) collaboration with other providers in the health-care system on behalf of patients and their families (Rogers et d., 1991). In their detailed discussion of pediatric home care for children with chronic respiratory insufficiency, Vaughn, Snarski, and Goldberg (1989) identified case management as having an essential role in the provision of quality assurance in home care programs. According to these authors, the case manager with clinical expertise, community awareness, and expert communication skills is the ideal person to objectively evaluate and monitor the services received by the child and family, assist with problem solving, coordinate the provision of services, and monitor the cost effectiveness of the home care services. The rising number of medically fragile/technology-dependentchildren surviving and making

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the transition from hospital to home settings has directly impacted the number of children receiving case-managed, homebound care services. However, a review of the literature revealed a scarcity of studies focusing on the effectiveness of case-managed, community-based home care programs. Cloonan and Shuster (1990) studied the daily activities of home health-care nurses providing care to a variety of patients with complex care needs. In this group, care coordination activities were labor intensive and demanded considerable nursing resources. Hazlett (1989) reviewed charts and billing data and interviewed parents of 15 children on home ventilator management. Eight of the mothers reported physical or mental exhaustion associated with their child’s care. One of the stressors identified was the activity required to coordinate various services and agencies involved in each child’s home care. The study offered no information as to the use of case management services. Wegener and Aday (1989) interviewed 138 families with ventilatorassisted children to determine family and caregiver stress levels. This study demonstrated the importance of a health-care professional as the designated case manager for the child. Lower stress scores were exhibited by family and caregiver when the case manager was a nurse as compared to situations in which there was no assigned case manager or in which the case manager was another type of health-care professional. Appropriate education of the nurse who wishes to pursue a career in providing nursing services in the patient’s home environment is addressed in the literature (Anderson, 1990; Cary, 1988; Stiller, 1988). Although community health nursing and public health nursing experiences have been a part of the baccalaureate nursing education curriculum for a number of years, education of master’s-prepared nurses in this area of practice was not implemented until the early 1980s (Cary, 1988). Cary (1988) notes that a baccalaureate nursing education is the minimal requirement for the professional nurse in home health care and suggests that graduate preparation be the minimum standard for clinical nurse specialists, case managers, supervisors, and administrative personnel. Handy (1988) notes that the home care of technologydependent patients involves clinical issues that are complex and continually changing, requiring the input of clinical nurse specialists. In summary, current literature documents the need for careful planning and coordination of complex systems of care for medically fragile/ technologydependent children at home. Case management is an approach to meeting that need. Although further research is required into the effectiveness of case management, experience to date has led to the description of role responsibilities and knowledge necessary to perform those functions.

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ROLE OF THE SPECIALIZED CARE MANAGER When the SHCP was developed, the role of the specialized care manager (SCM) was created to provide a dimension of direct planning, coordination, and quality assurance that had not been previously available to medically fragile/technology-dependentchildren under the Title XIX Medicaid Model Waiver in Michigan. The SCMs are master’sprepared nurses with pediatric experience in a variety of settings, including pediatric and neonatal intensive care, public health, and community-based services. They use their clinical expertise and knowledge of home care, community, and funding resources to assist families and health-care providers in planning, coordinating, and implementing home care. Care management extends far beyond the initial discharge to provide monitoring of care and services in the home setting and ongoing review and modification of the plan of care. Advocacy, communication, and documentation are important functions within the role. Since the specialized care managers are not affiliated with health-care providers, they can provide independent, objective assessment and intervention when problems arise. The SCMs act as liaisons among families, health-care providers, and public and private funding systems. Though not directly involved in the cost analysis of the home care, the SCMs do monitor care plans individually to ensure that all available resources are used appropriately and effectively. This assists in the achievement of quality assurance as well as cost effectiveness. In Michigan, six care managers provide coverage by geographic regions. Each care manager handles referrals from one or more of the three regional offices that administer Children’s Special Health Care Services around the state. The SHCP has provided services to more than 180 children and their families since 1988. As of March 1993, the caseload comprised 71 active cases: 60 receiving specialized care management and 11 transferred to community-based care management with less intensive follow-up by the SCMs. The average individual SCM caseload is 10 to 14 children and their families. Further detail regarding the functions of the specialized care managers is in the description of the care management process that follows.

Assessment and Approval Process Applications for the Specialized Home Care Program can be initiated on behalf of a child by the family, health-care agencies or institutions, locally based services staff of CSHCS, or community agencies. If the child is not already enrolled in CSHCS, a medical form is also necessary to determine eligibility and initiate enrollment in CSHCS.

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Establishing Eligibility

Approval for the SHCP is based on medical eligibility, financial eligibility, and safety and appropriateness of the home. Medical eligibility requires: (a) age less than 21 years and medical diagnosis covered by CSHCS, (b) technology dependence, and (c) certification by a pediatric specialist that without supported home care the child would need continued care in a medical institution. Technology dependence is defined as the need for technologically sophisticated equipment, skilled nursing observation and intervention at least every two hours, extraordinarily high skill levels of nursing due to the lack of stability of the child’s physical condition, or some combination of these factors. The financing of this care is dependent on the child’s eligibility for Medicaid. If the family does not meet the eligibility criteria, the child may still be able to access Medicaid through social security income benefits or through the Tax Equity and Fiscal Responsibility Act of 1982, a federal law that al€owschildren with major health-care needs to be considered on the basis of their own income and resources. Children with private insurance that covers hospital care are not eligible for the SHCP at this time. The safety and appropriateness of the home are difficult to assess from the initial application unless glaring deficiencies are reported. As a part of the initial assessment, the care manager considers the ability of the family to maintain adequate services at home (such as the ability to maintain telephone service, provide specialty care, and follow through with emergency plans), the adequacy of the home environment (such as the plumbing and electricity), and the availability of service providers and emergency services in the home community. Applications for the SHCP are reviewed by the regional office team (i .e ., regional medical consultant, regional nurse consultant, regional office administrator, and SCM), and a recommendation is made to the chief medical consultant. The case is reviewed by the chief medical consultant, chief nurse consultant, and regional medical consultants. If approved, a specialized care manager is assigned to the case and the family and CSHCS locally based services at the local health department are informed. If additional data is needed before a decision can be made, an SCM may be assigned to collect further information from the hospital, community agencies, or family. Assessment

After eligibility for the SHCP is determined, the specialized care manager meets with the family and child to discuss the SHCP and to begin assessment. The goals, procedures, and mutual duties and responsibili-

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ties central to the SHCP are discussed. The care manager begins to assess the parents’ knowledge of their child’s condition and care needs, their commitment to assuming responsibility for their child’s care at home, and their understanding of alternatives to home care. It is important to note the family’s strengths and areas that can serve as a foundation for growth in response to care demands. A Family Needs Assessmenr is completed to help the care manager and family identify areas for further intervention. Community resources or agencies already involved with the child’s care are identified and often need to be included in discharge planning. Assessment is a continuous process, and additional information regarding the child and family’s needs, strengths, and available supports as well as the safety and appropriateness of home care is gained as discharge planning proceeds. In some cases, it becomes apparent that home care is not appropriate. This may be due to a number of factors, including the inability of the parents to perform the necessary care, their unwillingness or inability to assume responsibility for their child’s care, an unsafe home environment, or a lack of adequate resources and services within the community to support home care. Unfortunately, alternative placements to the hospital or home settings for medically fragile/technology-dependentchildren are difficult to find.

Initial Care Planning: Hospital Referrals The discharge planning process is complicated for medically fragile/ technology-dependent children and should be started as early as possible. Hospital discharge planners are encouraged to contact the SHCP as soon as it becomes clear that a child’s care may be feasible in a home setting. It usually takes 1-2 months to complete the discharge planning process through the SHCP. Adequate support in terms of community health care and service providers, equipment, supplies, medical followup, and emergency services must be confirmed and in place before discharge to help ensure a more successful transition to the home setting. Discharge Team

As soon as possible after assignment to the case, the specialized care manager contacts the discharge planner, clinical nurse specialist, or other designated contact person at the hospital to set up an initial discharge planning meeting. A multidisciplinary team that includes the family should be involved in the planning process with input from all hospital services caring for the child. At the initial meeting, the child’s condition, prognosis, and home care needs are discussed. Community providers that are already active on the case are identified, and plans are made to contact other agencies or services that may be needed. The care

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manager must foster a collaborative relationship between the hospital staff, community providers, and family during the planning process. The SCM can play a useful role in assisting hospital staff and the family to identify, select, and coordinate providers in the community. The family is an integral part of the discharge planning team and therefore must be an active participant in the planning process. The parents help decide what services will be accessed and who the providers will be; thus they need information and expertise from the care manager and hospital staff to allow them to make informed decisions. Family members must know that their ideas and feelings are valued. The obvious way to convey this valuing process is by incorporating their ideas into the care plan whenever possible. When not possible, it is extremely important to validate why family ideas cannot be used and to develop compromises. During this planning process, the focus is on the best interests of the child and family rather than those of the health-care team professionals, institutions, and funding sowces. Although sometimes “best interests” are difficult to identify, this basic value during periods of ambiguity or conflict over choices will improve chances of optimal outcomes. Care Plan

The hospital nursing and discharge planning staff are responsible for completing the comprehensive home care plan for the SHCP with assistance from the care manager. The care plan details problems and home care interventions needed for each physical body system and for health patterns, including growth and development, nutrition, education, behavior, and psychosocial areas. The care plan also includes a complete listing of services and providers to be used in the home care setting, the funding sources to be used, and lists of all equipment, supplies, and medications. The care manager can share information on care interventions that have proved effective in similar home care situations. A major goal in the transition from hospital care is not to turn home into a satellite intensive care unit. Instead, the goal of transition is to blend the child’s complex care demands into the family routine, preserving the positive aspects of the family interaction and the home and community environment that make home care advantageous for children. The input from parents regarding their family’s needs, home routine, their support systems, limits of their ability to cope with the care demands, and what they envision for their child at home is crucial to the development of a relevant plan of care. The interventions in the care plan should reflect the transition goal. In addition, this goal should guide the training of family and community caregivers, the selection of equipment and supplies, and the determination of levels of nursing support in

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the home. For example, parents should not be taught sterile technique for suctioning when clean technique is adequate at home.

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Training of Caregivers

The parents should be as self-sufficient as possible in all aspects of their child’s home care. This self-sufficiency emerges from a good understanding of the pathophysiology of their child’s condition, the child’s physical care needs, the operation of the equipment, and emergency procedures. Knowledge of how to provide for their child’s care needs will assist parents and other caregivers to gain a sense of confidence in their ability to cope with the demands of home care. The SHCP requires that an alternative caregiver be identified, trained, and available to substitute for the primary caregiver when needed. In some cases, this means that both parents are well trained. In single-parent families, it may be necessary for a grandparent, another relative, or a close friend to receive the training. In addition, other people in the community (for example, the special education staff) may need to be trained in some aspects of care such as suctioning, use of a resuscitation bag, and emergency procedures. Nursing Support

Both intermittent skilled nursing visits and hourly nursing care are available to families through the SHCP. The level of home nursing support must be based on the individual needs of the child and family. The child’s condition and degree of stability, the complexity of care needed, and the psychosocial situation are all factors to consider in each case. Patient classification systems and/or studying the number of hours spent in care activities each day can provide a starting point but do not account for the total demand on the family unit. No totally objective means of determining the appropriate number of nursing hours has been found to date. Guidelines have been developed based on experience and data available from patient classification trials. In most cases, the level of nursing support is gradually decreased by a few hours per day over the first 6-8 weeks after discharge. It is important that the family, nursing agency, and other support services understand from the beginning of transition that as the child stabilizes in the home setting and the care needs become less intensive and better integrated into the family routine, the level of nursing support will be reduced. The level of nursing support can also be increased when care demands or a family’s ability to meet those demands changes. Families’ and community care providers’ needs and requests are taken into consideration as nursing care support decisions are made. Nursing agencies who provide services to medically fragile/

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technology-dependent children should have nurses with W a t r i c and high-technology care skills. It is often diff‘lcult to find nurses with these skills in community agencies, and adequate staffiig to meet family needs is often a problem. All nurses should be trained and oriented specifically to each child’s care. One or two nurses may orient in the hospital setting and assist with the training of additional staff at the agency. Videotapes of a child’s care have proven useful in providing orientation and review for agency staff. Flexibility in staffing is also necessary in these cases because the families’ needs change frequently. Equipment

The medical equipment company selected should have staff who have experience in working with children with complex care and hightechnology needs, especially in the area of respiratory therapy, a common area of health deviation for children with special health-care concerns. The provider also should assess the home for appropriate electrical, space, and other environmental requirements. The SCM has responsibility for assisting the provider to understand the prior approval and reimbursement system required by CSHCS and Medicaid. Lists of equipment and supplies submitted for approval with the care plan should be complete and specific to each child’s needs. The approved lists become the basis for the ordering of supplies in the home. Emergency Plan

The care manager monitors the development of a plan for emergency care in the community. The family plays an active role in notifying the police, fire department, ambulance, utility companies, and road commission of the child’s presence and need for emergency back-up and maintenance of service. Plans are developed for appropriate use and notification of local hospitals and emergency services. Special transport systems to tertiary care centers may be required in some emergencies. Finalizing the Plan

A fmal discharge conference is held within weeks of the planned discharge date. Representatives from community health-care agencies, as well as from other community resources such as special education and community mental health staff, join the hospital team, the SCM, and the family. This provides an opportunity for all providers and caregivers to meet, discuss remaining issues or problems, and have questions answered. Details of the care plan are finalized and the readiness of the family and community providers to assume responsibility for the child’s care is determined. The care manager reviews the care plan to assess whether care inter-

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ventions appear appropriate and whether adequate resources and support systems are in place. The SCM then meets with the CSHCS regional office team to discuss and make recommendations as to approval of the plan of care. The regional office team identifies features of the care plan that may be problematic, suggests resources that may be useful, and provides other guidance related to health-care system issues. After approval, authorization for covered services becomes effective on the date of the child’s discharge. If community resources and adequate support are not yet available, the hospital is strongly discouraged from discharging the child, and authorization for payment for home care services may be withheld.

Initial Care Planning: Community Referrals The process for development and approval of comprehensive home care plans for children who are already receiving care in home settings is largely the same as for hospital referrals. Multidisciplinary teams of community providers and agencies meet with the family and care manager to determine needs and to plan for appropriate interventions. However, the community supports and resources are usually already in place and operative. If the existing system of care has been effective and is meeting the child’s and family’s needs, the care plan will be largely a continuation of a tested approach. In some cases in which services have been a problem, changes in providers or approaches to care may be needed. The care manager often takes a more active role in writing the comprehensive home care plan for community referrals, but responsibility for completion may be assumed by other professionals such as nursing agency staff or community mental health caseworkers. The family’s input is again invaluable, especially because they have experienced the home care demands and usually know what supports and resources work well for them. The providers and family are often more familiar with case management and reimbursement through private third-party payors and may require thorough orientation to the philosophy, procedures, services, and reimbursement system of the SHCP.

CONTINUATION OF SUPPORTED CARE The SHCP provides specialized care management services to children and their families for prolonged periods after discharge to facilitate the integration and stabilization of the child’s care needs in the home and community setting. In most cases, specialized care management continues for 1-2 years after initial discharge or transfer to the SHCP.

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Recert@cation Process Ongoing assessment, review, and modification of the plan of care after the initial care plan are implemented as needed. The SCM makes a home visit within the fist week to 10 days after discharge to assess the child’s condition and response to home care, the family’s adjustment to the care demands, and the effectiveness of the care plan. Changes in the care interventions are often made as the care routine is adapted to the home situation. Troubleshooting and problem-solving for the family and community providers are common during the first weeks and months at home and require that the SCM be available to assist as needed. The original care plan is usually approved for a 30-day period and is recertified by the end of that time. The recertification process includes a complete review by the SCM of the child’s care needs and resource system and a brief written update of the current status and changes in the plan of care. The SCM meets with the family and providers to review the care plan and obtain input for the recertification. Data collected include information about hospitalizations; results of medical follow-up and planned evaluations; changes in care interventions, medications, and therapy interventions; school services; psychosocial resources; and equipment and supplies. Levels of nursing supprt are discussed and may be changed if the family has an increased or decreased need for support. The updated care plan is presented to the CSHCS regional office team by the SCM. Input, concerns, and recommendations of the team are noted and a decision is made to approve or amend the recertification plan of care. The family has the right to appeal any decision of the regional office team. As the child continues to be cared for in the home setting and if the care is stabilizing, the recertification period is gradually lengthened to 60-, 90-, or 120-day periods. On an annual basis, the comprehensive home care plan is reviewed and rewritten for the recertification. The SCM remains available at all times for questions or problems that may arise in the delivery of home care to the child. If substantial changes in the care plan become necessary, the care plan can be recertified ahead of schedule.

Monitoring of Care and Services As an objective observer who is neither a member of the family nor a direct provider of care, the SCM is in a unique position to use clinical skills to assess and evaluate the care and services being provided to the child. Changes in the care interventions may be needed. Information gained from other SHCP cases can be useful in improving care or solving problems. Community care providers may have had limited or

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no prior experience with home care of medically fragile/technologydependent children. Questions often arise regarding appropriate standards of care, current interventions being applied in other cases, and what they can expect to see as a response to care interventions. The SCM can serve as a information resource to the family and providers in these areas. The care manager also monitors whether the child’s care and technological support are being integrated into the home setting or whether the family and health-care providers are turning the home into an intensive care unit. This frequently happens when caregivers and nurses are insecure about the care delivery and afraid to abandon rigid institutional care routines. The care manager can facilitate the integration by offering clinical expertise and support for gradually revising care schedules or practices in the home and enlisting medical support for the changes. In instances in which care or services are not adequate, the SCM works with the family to identify additional resources or alternative providers if necessary. The family’s ability to meet and adjust to the care demands is also monitored and support systems are altered if possible. If care of the child no longer appears to be safe in the home setting, then rehospitalization and an alternate home care plan may be required.

Coordination of Community Resources It is not unusual for the plan of care to involve large numbers of providers and resources. The child’s care will often require one or more nursing agencies, medical equipment suppliers, a pharmacy, a laboratory, the school system, community mental health professionals, the local health department, the Department of Social Services, two or more hospitals, and multiple physicians. Demands of coordinating and interacting with so many providers can be overwhelming for even the most functional families. During periods when parents’ stress levels are high, such as the first few months of the transition to home care, the task can seriously undermine the family’s ability to cope with the care demands. The care manager plays an important role in communicating with agencies and providers, reviewing services, and ensuring that services are not duplicated, fragmented, or missing. The care manager also serves providers as a central source of information about needed services and plans for intervention for the child and family.

Communication Good communication is crucial to the success of home care for these children. The child and members of the family need to be able to com-

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municate with each other and with the providers involved in home care. Honest, open sharing of ideas and concerns as well as information is important in developing a sound parent-professional partnership. As always, communication is a two-way street. Professionals need to share information, problems, potential solutions, and expected outcomes with parents so that they can make informed decisions. Parents need to share their needs, concerns, strengths, and hopes with professionals. All parties must listen, really listen, to each other to ensure the best care for the child. Early in the transition to home care, when relationships are new and fragde, parents and providers may be reluctant to communicate as openly with each other as necessary to resolve problems. The care manager can be an effective buffer or liaison to get communication started. Later on, the need to act as a facilitator may recur when major disagreements arise and potential conflict stifles direct communication. In most cases, the ability of parents and providers to communicate with each other grows as trust develops between them. The care manager also has a role to play in facilitating communication between families and providers and the public funding system. Families and providers often experience frustration in trying to understand and communicate with what appears to be a vast public bureaucracy. CSHCS and Medicaid are not always aware of the concerns or needs of the families and providers. The care manager facilitates this level of communication by getting people in touch with people and by accurately representing each side’s position to the other.

Advocacy An important part of the care manager’s role is to be an advocate for the child and family. This involves supporting parents as part of the healthcare team, assisting them in accessing necessary services for their child, and working to eliminate barriers to care and services. Although parents should be able to participate in a parent-professional partnership and retain decision-making control over their child’s care, advocacy is also needed at times to allow them to remain in more traditional parenting roles. There are times when parents want and need to be “Mom” and “Dad” rather than nurses and equipment experts. Care managers are frequently asked by families to help them negotiate for care and services. For example, an SCM may attend the individual educational plan conference with the family to discuss educational needs with the special education staff. The care manager’s knowledge of the child’s needs and abilities as well as the rights of the child and family

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regarding school services can be useful in obtaining services for the child at home or in school settings. Care management may also require the care manager to be an advocate for the child in situations in which the ability of the parents to safely and appropriately care for the child is deteriorating. Protecting the child while continuing to offer support to the parents requires sensitivity and diplomacy. Sometimes additional supports are effective; at other times it may not be possible to resolve the issues that threaten the child’s safety, and the care manager must advocate for a different, safe environment for the child.

Teaching Care Management Skills to Families An important goal of care management is to prepare families to manage their child’s care themselves. Care managers tend to develop close relationships with the families they serve, and care must be taken not to foster too much dependency on the part of the families. Teaching care management skills begins prior to discharge by helping the family learn to participate in planning their child’s care and to assume an active role in a parent-professional partnership. It continues on into the community setting as parents become experts on their child’s needs and care. As the stress of home care demands diminishes with time, parents have more energy to invest in coordinating and trouble-shooting their child’s care. The care manager can build on the parents’ strengths and encourage effective problem-solving skills and communication. Teaching by example is effective in this situation. As the care manager solves problems and identifies new resources, the steps in the process should be communicated back to the parents. Sharing information with the parents about how a problem was identified, who was contacted, what was done, or how resources were located helps parents learn how to approach similar situations in the future. As parents learn to initiate interactions and solve problems on their own, their sense of control increases and feelings of stress and powerlessness decrease.

TRANSITION Iy) COMMUNITY-BASED CARE MANAGEMENT Specialized care management under the Specialized Home Care Program is designed to provide expert, intensive intervention and monitoring by specialized care managers during the transition from hospital to home care. Although this level of intervention is usually necessary for a prolonged period after discharge, most of the cases stabilize and require less intensive management after 1-2 years. At this point, transition to

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community-based care management is discussed with the family and plans for an orderly transition are begun. The family’s level of comfort with the idea of changing care managers should be taken into consideration and may affect the timing of such a change. As in all other planning situations, the family is actively involved in the transition process. Criteriafor lkansition

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The decision to transfer a child to community-based care management is based on several criteria: 1 . The plan of care is stable and minimal modifications are expected. This implies that the child’s physical condition and care needs are stable and that the family has adjusted to the demands of the child’s care at home. 2. The child’s care has been integrated into a routine at home and in the community (such as school attendance if appropriate) that meets the child’s and family’s needs. 3. A stable and effective system of resources and health-care providers is in place to assist with the home care needs. 4. Schedules have been established for medical follow-up and evaluation of the emergency plan. 5. The family is able to coordinate and maintain interaction with community resources and service providers, with assistance from a local care manager. 6. A local care manager, acceptable to the family, is available to assume responsibility for reviewing and recertifying the SHCP care plan on a regular schedule and for providing care management assistance to the family as needed.

The specialized care manager and family work together to choose a local care manger, who can be chosen from public health, community health, or the educational systems. Nurses working with CSHCS through locally based services at county public health departments are often well prepared to provide local care management to SHCP families because they understand the CSHCS system, interact with the families during assessment and enrollment procedures for CSHCS, have knowledge of community resources, and are routinely kept informed of local SHCP cases by the specialized care managers. In some instances, community mental health caseworkers or social workers from the school system may be good choices as local care managers. A local care manager should have the desire, skill, and availability to serve as a back-up resource for the family in coordinating and troubleshooting home care services. Staff from home nursing agencies

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involved in the case are not used as local care managers because the independent objectivity would be jeopardized by using a professional who is employed by a provider on the case.

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Communication with Local Resources At least 3 months prior to change from the state-sponsored source of care management to the community care manager, planning begins to ensure an orderly transition. This usually occurs during the recertification process. The SCM makes a joint home visit with the local care manager and they work on the recertification care plan together. The SCM contacts the physician, care providers, and community resources to inform them of the plan for transition and to obtain their input. The 3month recertification period usually allows enough time for questions to be answered and for the family and local care manager to prepare for the change. It is beneficial if the transition can be made at the time that the annual recertification of the comprehensive home care plan is done. This is a logical time for the providers, family, and care managers to meet and thoroughly review the plan of care. It provides an opportunity for everyone to meet the local care manager and for the local care manager to grasp the overall picture of care.

Follow-Up afer Transition Although the local care manager assumes responsibility for the day-today care management and the recertification process, the SCM remains available to the local care manager and the family as needed. It may take time for the family to adjust to a new care manager, and the SCM should seek to facilitate this process whenever possible. If the child’s care needs or the family’s ability to meet the care demands change significantly, the family or the local care manager can request that specialized care management be resumed. This may be necessary if care management needs become complex and intense again. Most families become very adept at managing their child’s care at home. However, a back-up care management system is needed that can assist families when they go through periods of crisis and are less able to perform care management in addition to their other role responsibilities. At other times families may need a new resource and require assistance to access the needed resource. Just as the child’s need for complex home care may continue long-term, so does the need for varying intensities of care management to support the family’s delivery of that care.

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POSITIVE EFFECTS OF CARE MANAGER ROLE The role of the specialized care manager appears to have a number of positive effects for medically fragile/technology-dependentchildren and their families: (a) support of children and families during transitions from hospital to home care settings; (b) provision of objective clinical assessment of the need for changes in care and services; (c) provision of advocacy and negotiation for care and services; (d) provision of quality assurance for the child’s care in the home setting; (e) monitoring of cost effectiveness and allocation of resources; (f) exchange and dissemination of information regarding successful care practices and available resources; (g) opportunity for giving input into public programs and the larger health-care system regarding need for changes, development of standards of care, and policy decisions; and (h) empowerment of families to advocate for and manage the care of their own children.

CHALLENGES FOR THE FUTURE Future challenges for home care management of medically fragile/ technology-dependent children directly parallel the challenges presented by the continued increase in the number of children surviving with severe, long-term health-care needs. More and varied placement alternatives for children whose home settings are not appropriate for their care needs are needed. Respite programs are also needed for families to allow longer breaks from the crushing demands of complex care needs. Training of community home health-care professionals in the care of this population must be increased to keep pace with increasing demand for competent care providers. Standards of care are lacking and should be developed for high-technology home care. Development of a network of parent-to-parent and professional-to-professional support around the country would be useful and informative. Research is needed to assess the effectiveness of care-managed programs in the delivery of home care to this population. Finally, there is a need for programs that address the needs of families whose chronically ill children require extensive but not necessarily highly skilled care at home. Experience over the past decade has shown that care for medically fragile/technologydependent children can be effectively and safely provided in home settings. Much has been learned about how to achieve these results. The challenge for the next decade is to expand and improve our ability to provide quality, cost-effective home care while preserving the nurturing environment that will maximize the growth and development of children with special health-care needs and their families.

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REFERENCES Aday, L. A., Wegener, D. H., Anderson, R. M., & Aitken, M. J. (1989). Home care for ventilator-assistedchildren. Health Affairs, 8(2), 137-147. Anderson, J. M. (1990). Home care management in chronic illness and the self-care movement: An analysis of ideologies and economic processes influencing policy decisions. Advances in Nursing Science, 12(2), 71-83. Burr, B. H., Guyer, B., Todres, I. D., Abrams, B., & Chiodo, T. (1983). Home care for children on respirators. New England Journal of Medicine, 3@, 1319-1323. Cary, A. H. (1988). Preparation for professional practice: What do we need? Nursing Clinics of North America, 23, 341-351. Cloonan, P. A., & Shuster, G. F. (1990). Care coordination: A resource-intensive component of home health nursing practice. Public Health Nursing, 7(4), 204-208. Donar, M. E. (1988). Community care: Pediatric home mechanical ventilation. Holistic Nursing Practice, 2(2), 68-80. Feinberg, E. A. (1985). Family stress in pediatric home care. Caring, 4(5), 38, 40-41. Handy, C. M. (1988). Home care of patients with technically complex nursing needs: High technology home care. Nursing Clinics of North America, 23, 315-329. Hazlett, D. E. (1989). A study of pediatric home ventilator management: Medical, psychosocial and financial aspects. Journal of Pediatric Nursing, 4, 284-294. Numinen, V. J., Haas, D. L., Yaroch, L., & Fralick, P. (1993). Building community based service systems for children with special needs: The Michigan Locally Based Services Program. Issues in Comprehensive Pediatric Nursing, 15(1). Rogers, M., Riordan, J., & Swindle, D. (1991). Community-based nursing care management pays off. Nursing Management, 22(3), 30-34. Stiller, S. B. (1988). Success and difficulty in high-tech home care. Public Health Nursing, 5(2), 68-75. Vaughn, C., Snarski, R.,& Goldberg, A. I. (1989). Pediatric home care for chronic respiratory insufficiency. Journal of Home Health Care Practice, 1(2), 63-69. Wegener, D. H., & Aday, L. A. (1989). Home care for ventilator-assisted children: Predicting family stress. Pediatric Nursing, 15, 371-376. Wong, D. L. (1991). Transition from hospital to home for children with complex medical care. Journal of Pediatric Oncology Nursing, 8(1), 3-9.

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