Parent consultants in the health-care system: a new approach in the care of children with special needs.

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PARENT CONSULTANTS IN THE HEALTH-CARE SYSTEM: A NEW APPROACH IN THE CARE OF CHILDREN WITH SPECIAL. NEEDS ELIZABETH S. STEWART, M.S.N., R.N. Duke University Medical Center Durham, North Carolina CHANDICE COVINGlUN, Ph.D., R.N. C., I! N. I! Children’s Hospital of Michigan Wayne State University, College of Nursing Detroit

A unique and innovative role for parents has emerged from the recent emphasis on

family-centered, community-based health care for children with special health-care needs. The role of parent consultant is described in the following article. Identified are the characteristics of the consultant role, benefits as well as challenges, how the role is enacted, and ways to finance the position. Nurses can serve to support and nurture the parent consultant role to ensure positive role development. Parent consultants have a unique and important perspective to offer in the delivery of a family-centered approach.

In our increasingly complex and technical society, the challenge to ensure that children with special health-care needs and their families are participating in family-centered care is being addressed by the inclusion of a new role-the parent consultant. In 1992, the National Parent Resource Center in Boston provided preliminary results of a survey of state health departments that revealed that about half of the 50 states have hired parent consultants. Children’s hospitals across the country are also sites where the role is being implemented. In the United States, 10-15% of children have a chronic condition requiring regular and often frequent interactions with the health-care system (Hobbs & Perrin, 1985). In response to the needs of these growing numbers of children and their families, a national agenda was established in 1987 by the U.S. Department of Health and Human Services asking that professionals and families work together to improve the quality of health care and the quality of life for children and families. The parent consultant role is a natural Issues in Comprehensive Pediatric Nursing, 15:123-139, 1992 Copyright 0 1992 Taylor & Francis 01460862/92 $10.00 -k .OO

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evolution from these two social forces that addresses the interests of children within their families and the working partnership between parents and professionals. The concept of family-centered care, a philosophy of care that embodies the pivotal role of the family in the lives of all children but particularly children with special needs, was articulated by the Association for the Care of Children’s Health through the statement of nine key elements of family-centered care, all of which speak to excellence in children’s health care (Edelman, 1991). The elements define the need for more active involvement of parents and families as they work together with professionals on the health-care team.One newly evolving role to assist health-related settings to offer family-centered care is that of the parent consultant.

R A T I O N U AND INDICATION FOR P A R E ” CONSUUMTS The encouragement and facilitation of family-to-family support and networking is one of the key elements of family-centered care (Edelman, 1991). It is a common human behavior to seek out another person who has experienced a similar situation. Parents have been helping and supporting one another through pregnancy; through their children’s infancy, toddler, and school-age years; and through the ofttimes tumultuous years of adolescence. When parents learn that their child has a chronic illness, a disabling condition, or a life-threatening illness, their responses can represent a wide range of human emotions, from loss and grief, anger, fear, guilt, isolation, and frustration to thankfulness, joy, and elation over the child’s survival (Nathanson, 1986; Phillips, 1990). Parents may seek assistance from parent support groups when they lack extendedfamily support or find that mutual self-help is more acceptable. Additionally, parents realize that if they wish to be knowledgeable advocates for their children, an emphasis on parent-professional collaboration can be helpful (Rawlings & Horner, 1990; Self-Help Clearinghouses, 1992; Phillips & Brostoff, 1989). The parent consultant links these important forms of assistance and collaboration.

Family Support Mechanisms Families often have a social network that offers a wealth of support and resources. The parent consultant places major emphasis on strengthening and building natural support systems for families that create positive, proactive linkages with the already existing family support network (Dunst, Trivitte, & Deal, 1988; Williams, 1988). Oftentimes, other par-


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ents who have experienced a similar situation become part of that informal support network. Smith (1 984) strongly urges parents that, on learning that their child has a handicap, they should first find another parent of a handicapped child and seek his or her assistance. Because parents have long recognized the value and importance of peer support, there are now many community-based parent-to-parent support programs whose primary focus is to assist parents by providing one-on-one peer counseling and support (Cansler & Mastrianni, 1987; Huber, 1992; Iscoe & Bordelon, 1985; Scott & Doyle, 1984; Shelton, Jeppson, & Johnson, 1987). Although parent support groups have been beneficial for many, they are not appropriate for everyone (Chessler, Barberin, & Lebo-Stein, 1984; Rawlings & Homer, 1990; Shosenberg, 1980; Yo&, Chesney, & Schwartz, 1985). When there are not formal support groups or the opportunity for parent-to-parent contact through a community-based parent-to-parent program, there is often an informal type of support that develops between parents of hospitalized children or parents in the outpatient clinic. Lynman (1987) examined the relationships that parents developed with one another while their children with cancer were hospitalized. She discovered that these informal parent relationships were perceived by parents as supportive and helped them cope more effectively with the stress of illness and hospitalization. These parents helped one another by listening, anticipating needs, familiarizing new parents with the hospital environment, and encouraging parents to take care of themselves. The feeling that someone else really understood their experience was the single most important element in the overall support parents received from one another.

Parent Consultant Role Parent support groups, parent-to-parent programs, and the informal meeting of parents within the walls of hospitals and clinics have been taking place for many years and will continue to serve as sources of family support. A newer concept of parent support, however, exists in the recognition of the parent consultant. The parent consultant is a member of the health care team who has been hired for his or her parental experience and expertise. Although not well documented in the literature, there are now many hospitals, communities, and governmental programs that employ parent consultants. Pitel et al. (1985) describe the role of parent consultant in their Division of Pediatric Hematology/ Oncology as a parent of a child with cancer or other life-threatening disease whose primary responsibility is as liaison and advocate for fami-


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lies and their children with cancer. The parent consultants are salaried fully participating members of the health care team. Gutierrez-Richards (1988) reports that parents take advantage of talking with someone who “has been there,” who knows the hospital system, and who has experienced the sense of confusion and helplessness that they are now experiencing. The parent consultant may be the only member of the hospital staff who can truly share the parent’s perspective of having had a chronically ill child, thus creating a special bond with other parents. Gutierrez-Richards (1988) asserts that having a parent consultant on the treatment team transmits an important message of caring and understanding to all families. She states that the parent consultant does not take the place of a parent support group nor does it take the place of health-care professionals. The role of the parent consultant is to serve as a liaison with the hospital team and provide a role model for parents. To ensure that family-centered care is more than just a philosophy or a design of a building, a parent consultant can monitor and suggest adjustments so that elements of family-centered care are in actuality practiced in the institution, community, and state. The importance of family-centered care is acknowledged by the presence of a parent consultant as a member of the health care team. A parent consultant on the health-care team has been reported to have an effect that is often different from that of other staff members yet complements the services provided by other team members (Richards, Benson, Pitel, Pitel, & Forman, 1986). For example, parents educated in the health-care delivery system offer empathy based on shared experiences, provide peer counseling and emotional support, and maintain sensitivity to each family’s needs.

CRITERIA FOR ROLE OF P A R E ” CONSULTANT Other institutions and governmental agencies have hired parents to serve in a variety of roles as parent advocates, parent consultants, parentsupport coordinators, parent liaisons, parent program coordinators, and family support coordinators. Regardless of the name, all of these positions have several common criteria: 1. The person is the parent of a child who has or has had a special health-care need; therefore, that parent has first-hand experience in providing care for the child, interacting with health-care and educational professionals, and understanding and experiencing the impact on the family.


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2. The role is defined to provide emotional support for families as well as information and education. 3. The parent hired has skills and qualities that are important to the role. 4. An expectation exists that there will be constructive feedback offered by the consultant to the agency/hospital regarding families’ experiences. 5. The outcome of the role is that families will be empowered to participate as full members of the health-care team and to advocate for their child and family as well as to make positive changes in the health-care system.

P R E P W I O N , TWINING, AND EVALUATION Because the role of parent consultant is evolving, a national standard regarding preparation, training, and evaluation is not yet developed. Settings that employ parent consultants vary in requirements for the position, with the fact that the consultant applicant has parented a special needs child often being the sole requirement. Interviews assist in determining if a particular parent can enter into the role. As members of the health-care team, parent consultants need to possess skills and qualifications that are conducive to serving both as a team member and as an ombudsman between parents and other team members. Because there is no specific educational requirement for the parent consultant, requirements typically focus on desirable skills and qualities possessed by the parent consultant. Those skills and qualities identified as important for role development and enactment are listed in Table 1. Settings that employ parent consultants often design a specific training program for parent consultants, during which the new consultant receives basic information about health conditions that cause children to have special needs and the treatment of those needs. Information about the typical range of families’ psychosocial responses to the crisis of their child’s health-care problem and coping with chronicity can also be part of a training program. Consultants can also participate in continuing education offered by the employing institution. Evaluation of the parent consultant can be a formal part of the setting’s new-employee and annual evaluation process, or it can be designed to meet the specific needs of the role. It is extremely important that whatever methods are used, the consultant and the administrator responsible for the evaluation realize the desired outcomes to be achieved and by what time period these should be obtained. Parent consultants, especially those who have not worked in a health-care or business setting, may not be aware of routine information such as a proba-

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a b l e 1. Desired Skills and Qualitications of the Parent Consultant Parent of a child with a chronic illness or disability Demonstrates positive coping Remgnizes family strengths Is selfdirected and motivated Understands and is committed to family-centered care Acknowledges own limitations Experience working with parent groups and with professionals Strong leadership, organization, and management skills Good oral and written communication skills Skilled, empathetic listener Able to develop plans, organize ideas, and generate programs and written reports Sensitive to and nonjudgmental regarding cultural diversity or individual family differences, preferences, and lifestyles Able to serve as a positive role model Demonstrates problem-solving skills Able to speak comfortably about own situation Able to wear two hats (i.e., represent both the institution and parents) Knowledge of available community, state, and federal resources Knows how to make appropriate and timely referral to professionals Must be a team player

tionary period, merit raises, and benefits packages. Therefore, even if the parent is viewed as a consultant and not as a staff member, he or she should be oriented to these aspects of being employed that apply to the position.

SPECIFIC MODELS OF P A R E " CONSULXXNTS According to data gathered by Gutierrez-Richards (1988), a majority of the hospital-based consultant programs developed around a particular person who had emerged as a parent leader and had ad4ocated for the role of parent consultant in that particular institution. Because of this type of role evaluation, there is often no standard job description for the hospital-based parent consultant. At Duke University Medical Center, three parent consultants are employed, all working part-time but each working in different specialty areas with different job descriptions and under different lines of supervision. Their roles and responsibilities differ primarily according to the needs of their patient populations and their specialty areas. However, some similarities in their roles exist. All of the parent consultants at Duke are parents of children with a chronic illness. They have had



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personal experience parenting a child with a specific diagnosis or disorder, participated in recommended treatment plans, interacted with the health-care team and the hospital system, advocated for their child in the social service and educational systems, and coped with the impact of the chronic illness on their family. All three parent consultants have a college education, but their primary source of knowledge and skill is their life experience of parenting a chronically ill child. A specific example of a hospital-based parent consultant is the parent consultant on the Pediatric Brain Tumor Team. This consultant, the parent of a child who died in 1989 from complications associated with a brain tumor, functions in a variety of ways as a parent consultant. Her primary responsibility is the provision of support to other parents who have a child with a brain tumor. She does this by talking with parents one-to-one, cofacilitating three different parent support groups, participating in a parent-to-parent network, assisting with the family lending library, and developing and coordinating the bereavement program. The parent consultant participates in patient rounds and interacts with the health-care team, often informing them and educating them about particular parent or family needs. She also participates in the writing and editing of a family support newsletter, published quarterly, and makes referrals to health professionals, including social workers, clinical nurse specialists, physicians, and psychologists, as she becomes aware of a family need. Positioned in a large medical center, this consultant is a friend to families, easy to talk to, nonthreatening in her approach to families, energetic, creative, and having time to listen to parents. Families immediately sense that she truly understands their fears and frustrations and that she is empathetic and supportive. She helps families to advocate for their child's needs and for the needs of the family, and she assists them in accessing and using appropriate resources. At the same time, this parent consultant realizes the vital importance of respecting the special relationships that families have with members of the healthcare team and encourages communication between families and other health-care professionals. Through these approaches, this parent consultant moves family-centered care philosophy into reality.

ROLES AND RESPONSIBILITIES OF THE P A R E " CONSULTANT The many and varied roles and responsibilities of the parent consultant are delineated in Table 2. Key terms that describe the roles of the parent consultant include communicator, supporter, facilitator, advocate, liaison, developer, and educator. Granted, all these roles can be difficult for one person to manage. However, it is clear that the parent consultant is

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'Igble 2. Roles and Responsibilities of Hospitd-Based Parent Consultants Provide emotional support to other parents Encourage participation in parent support groups Participate in or cofacilitate parent support groups Educate families about the hospital system and resources both within and outside the hospital Available on a one-to-one basis for families Establish telephone contact with families Serve as liaison between families and staff Advocate for families Participate as a member of the health-care team Communicate in writing with other parents and professionals Establish resources and a library Develop parent network Participate in patient rounds and outpatient care conferences Educate professionals about the needs and strengths of families

in an extraordinary position to bridge the span of experience between the hospital and home settings for the family and health provider. Although the parent consultant can also be a member of a health-care profession, typically the consultant's allegiance is to the child and the family ahead of the usual organizational duties that can often consume the time of health providers.

BENEFITS OF THE PARENT CONSUIXMT ROLE To THE ORGANIZATION Benefls to the Organization Many benefits spring from having a parent consultant as a member of the health-care team. Benefits to the institution and agency include having direct parental input into decision making and problem solving to improve services for children and families. In addition, parent consultants are a ready resource to nursing, medical staff, and other healthcare professionals in that they can highlight family strengths and needs and the importance of a family-centered approach for a particular family. Oftentimes, a parent consultant will bring the hospital or agency additional publicity and public recognition because the existence of the role demonstrates a commitment to the consumer-the patient and family. A parent consultant can be a cost-effective means of providing psychosocial support and education to families because hospital stays may be


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shortened, professional staff tasks may be easier to achieve, and repeat hospitalizations may be reduced. Research is needed to substantiate the contributions of this role to quality, cost-effective care.


Benefits to the Family Inclusion of a parent consultant as a member of the health-care team offers many benefits for patients and families. The parent consultant can bring to life family-centered tenets deemed important by parents and health-care professionals alike. These benefits include the following: (a) Family empowerment. The empowerment of the family within the systems of child services, such as the health and educational systems, bolsters the strength of the family as a basic social unit, which is extremely important for our society. True power sharing provides the opportunity for parents to advocate on behalf of their child, a process that can improve family coping and the parent-child relationship. Research demonstrates that uncertainty and loss of control are two main causative factors of family stress and diminished coping (Martocchio, 1985; Mishel & Sorenson, 1991; Rosenbaum, 1988). An empowered family has a say and a stake in the future of their child, a future that is inherently connected to the family’s future. (b) Reinforcement of the pivotal role of the family in the child’s life. Since the beginnings of humankind, the family has served as a the foundational unit for child survival. Although other forms of childrearing have been used through the centuries, such as foundling homes and orphanages, experience demonstrates that children do not thrive within such settings, especially when there is a lack of permanent nurturing relationships. Although professionals and parents are aware of the pivotal role of the family in the life of a child, the parent consultant serves as a constant and consistent reminder during times of stress, conflict, planning, and decision making that accompany the process of caring for a child with special needs. This consultant can assist professionals and parents to determine how to best meet the needs of a child, placing the focus on the family role. (c) Greater independence and improved case management capabilities for families. Parents are known to be effective as case managers for their child. However, just as a professional must learn the skills and art of the profession, the parent must have the opportunity to gradually increase personal skills of case management. The parent consultant can foster a mentor relationship with parents toward the goal of serving as an effective case manager for this child. The consultant can review with the parents beginning case management activities, critique how the parents enacted the role, and make suggestions to improve the subsequent


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activities. Gradually, the parents can reach greater levels of independence as they gain experiences that achieve the desired goal: meeting the needs of their child. (d) Increased awareness of and utilization of available resources. Although health team members may be aware of family resources, the parent consultant is in the position of possessing firsthand knowledge of the “family-friendly” nature of resources. Due to the constantly changing nature of funding for local, state, and regional resources, knowledge about the quality of such resources can be sparse or inaccurate. The parent consultant often functions as a liaison between the hospital and resource and can help facilitate the family’s appropriate and comfortable use of the services supplied by a resource. For example, a parent consultant can visit the resource and evaluate its services through the eyes of a parent while at the same time assessing the quality and effectiveness of rendered services as a professional might. (e) Increased emotional support, permitting families to focus on important information and learning. Cognitive and psychomotor skill learning by parents is typically required before the discharge home of a child with special health-care needs. Learning principles emphasize the need for the learner to be able to concentrate on the learning task. Although a person can learn during a crisis, emotional stress must be at a low level, or learning will be prevented. The role of parent consultant serves the parent as a source of support, a listening ear, and an advocate. The therapeutic intent is that the parents’ emotional circuits are fieed up to attend to the important information being conveyed about their child and the needed learning that must occur prior to discharge. (f) Development of respectful partnerships and parent/professionul collaboration. Communication is the key to partnership and collaboration. The parent consultant’s most crucial role is to enhance communication and correct miscommunication between and among families and other health-care team members. The consultant can set the tone of the team approach by role modeling the concept of mutual respect through all interactions. When a parent consultant notes that nonrespectful behavior is occurring, she or he can investigate the roots of this behavior and work toward changing the perception that fuels the behavior. For collaboration to truly exist, professionals must be able to trust parents and vice versa. Without such trust to anchor interactions, collaboration can remain a theoretical notion without actual realization of the desired outcome of such collaboration, namely optimal health and functioning of the child. (g) Families participate filly as members of the health-care team. The parent consultant can, in the early stages of parent participation, assist by informing families on the rights and responsibilities of being a



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team member and by prompting their involvement. By doing so, family members gradually learn the team approach to caregiving. As the family takes on more of a role, the team members can appreciate the milieu of team functioning when a parent is a full member, if that membership is nurtured and mentored by the parent consultant. Without the parent consultant, team involvement for parents can, in some settings, be informational only, with decisions made without input or consideration by the parent. (h) Increased awareness of patients ’ and families ’ strengths. In decades past and currently in care settings where family-centered tenets are not institutionalized, parents are often viewed as stressed, detached, or overly protective. Team members, however, can experience firsthand the many strengths of the family unit when parents are respected, active members of the team. Supported parents can “shine” in their ability to creatively problem-solve and enhance the strengths of their child. The parent consultant role serves to highlight the family strengths by advocating for family inclusion. Even families that have dysfunctional patterns can have those strengths that can or do exist bolstered through the efforts of the parent consultant.

Benefls to the Parent Consultant Although many benefits exist for the organization, the parent consultant too can reap benefits from being involved in such a role. First, the parent has the opportunity to provide a model for parent/professional collaboration and to affect systems. Within the model, the consultant endorses the value of parents and family strengths and gleans personal rewards and pleasure in making positive changes that affect families and others. Due to the nature of the position, the consultant gets involved and updated on available resources and services. Furthermore, the role provides monetary compensation for what in the past may have been a volunteer effort. Lastly, a great deal of satisfaction of accomplishment and involvement can be realized in the role of parent consultant.

CHALLENGES To THE P A R E ” CONSULTANT ROLE Potential challenges must be considered if the parent consultant role is to be enacted and respected. First, families and professionals must agree, in practice as well as theory, that families have a sanctioned right and a responsibility to hold a position of power in the determination of care for their child. A challenge exists for the parent consultant when consensus is not present within the team regarding the role of the family in the care decisions of the child. The consultant must negotiate family-


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centered care in the midst of establishing a family and staff commitment to family-centered care. Importantly, the role modeling of this commitment by the consultant will be a key force in changing and updating the values held by the members of the family and the other health-care team members. The parent consultant role, in an institution founded on traditional rules and values, can pdentially be uncomfortable for the parent consultant and for health-care professionals. Because the parent consultant is perceived by families as friendly, safe, nonthreatening, available, and highly understanding and empathetic, health-care professionals can feel threatened by the bonding that takes place between families and parent consultants. Concern may be expressed about the parent consultant’s lack of appropriate health-care education and thus the possibility for the parent consultant to say something that may be wrong or harmful to other parents. Social work and nursing staffs, both recognized for their expertise in providing psychosocial and emotional support for patients and families, may particularly feel threatened. ‘‘‘hf”issues can be real and threatening. As in any change process, the introduction of the parent consultant role and the person filling that position must be well thought out and planned in advance. It is important to identify and delineate the parent consultant’s lines of authority, responsibility, and communication so that everyone on the health-care team is informed. Ideally, those members of the health-care team who will be interacting the most with the parent consultant should participate in the parent consultant’s role development, job description, interviewing process, orientation, and education. In the survey by Gutierrez-Richards (1988), direct supervisors of the parent consultants were found to be physicians, nurse supervisors, social workers, and directors of volunteers.

PERSONAL, ROLE CHALLENGES OF THE PARENT CONSULZMT Specific challenges for the person in the position of parent consultant also exist. However, if the parent consultant is aware and sensitive to the possibility, many of these challenges can be avoided. Typically, these challenges are associated with four concerns. One challenge stems from the uniqueness of the position of parent Consultant, in which the credentials focus on the parent’s experience and not on professional preparation. For example, being the “token” parent for an agency or organkation and lacking professional credentials and a professional education can result in feelings of inadequacy. Such feelings can be heightened when the parent consultant lacks administrative support and has no peers or other outlets within the system to articulate needs and fears. If the



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parent consultant denies these feelings or the need for support or attempts to mask those feelings, results can be detrimental to the realization of the role. Parent consultants must clearly understand that the term parent implies that the consultant skills necessary to the role emerge from their having parented a child with a special health need. Furthermore, the term consultant implies that those experiences serve as a basis for transferring that background in a format that can be helpful to other parents and professionals. Although some parent professionals are credentialed (e.g. , they may be a nurse or a social worker by degree), it is inherently important that the consultant represent the parent and family viewpoint and not function as a health professional. A second challenge results from the nature of the position (i.e., being a consultant without a line or staff position). In such a role, consultants can feel a need to constantly prove themselves to others. Conflicts with professionals can arise when championing the rights of parents while lacking a sanctioned source of power. These conflicts can prove to be defeating to the role. However, sanctioned organizational power is but one type of power that exists in systems. Expertise as a parent consultant can pave the way to having a share of the power through knowledge that results in role effectiveness. A third challenge is the lack of a predetermined role and job specificity. Typically, the parent consultant must be a pioneer, the first to enact the role. With no established job description of specific skills, the role can be diffuse and without boundaries. The positive side of being a pioneer is that the consultant can establish the role in a way that best fits personal as well as institutional needs. The last challenge of the parent consultant role is more personal. Although health professionals may have been called to the profession due to the occurrence of a personal experience, the role of parent consultant is built on the fact that the person has parented a child with special needs and shares that information. Knowing in what ways and how much to reveal about the family experience can be difficult. Related to this personal aspect are the continuing needs of the consultant’s family. Balancing the needs of family with job responsibilities, especially if parenting a child with special health needs, can prove taxing for all family members. Moreover, when the parent consultant is particularly successful in the role, she or he can allow the job to become allconsuming because an obvious need is being met. The solution to this challenge is a parent consultant who is mature and emotionally ready to address the very personal nature of the role and to establish a boundary between sharing the parenting experience as a consultant and maintaining a private family life away from the job setting. As the consultant increases in role effectiveness, health team members


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may expect the consultant to give more because of the personal basis of the role. Although overcommitment can be tempting due to the positive feedback the consultant receives, the time limits of the role must be clearly defined. Such a proactive stance ultimately will gamer the respect of team members who recognize the importance of preventing professional as well as consultant burnout. Seasoned parent consultants have built a network of other parent consultants from which support and a listening ear can be found. Prior to accepting a consultant position, the parent can have the administrative support outlined, giving the parents as well as the organization an opportunity to discuss potential challenges and possible solutions prior to beginning the role.

NURSE SUPPORT OF P A R E " CONSULTANT Nurses are in an ideal position to promote the establishment of support relationships between parent consultants in the initiation and maintenance of support networks (Lyman, 1987). Staff nurses and clinical nurse specialists can be supportive to parent consultants during these challenging times by offering a sounding board, explaining professional positions, and reinforcing the consultant's belief in the role. Demonstrating this supportive stance, especially during role development, will encourage other professionals to accept, support, and utilize the role.

FINANCING THE ROLE One of the greatest challenges for the hospital or agency that wants to employ the parent consultant as well as for the parent consultant him-or herself is to obtain adequate and ongoing funding for the position. Gutierrez-Richards (1988) found that parent consultants in paid positions were much more likely to have job stability and long-term involvement than in volunteer positions. Creative ways to obtain funds are needed because the parent consultant role is often not well established within the institution. In her survey of parent consultants, Gutierrez-Richards (1988) found that the parent consultant programs were funded by a variety of sources, including the hospital budget, grants, private donations, and special funds. Possibilities for obtaining funds could include the following sources: 1. Corporate and private donations; 2. Granting foundations or community groups, such as March of Dimes, American Heart Association, American Cancer Society, and Easter Seals. Information about these sources can be found in



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the Foundation Directory and through the local United Way Agency; 3. Civic and fraternal organizations such as the Women’s Medical Auxiliary, Junior League, Knights of Columbus, Lions Clubs, and community churches; 4. Hospitals, either through the specific department in pediatrics, such as cardiology, pulmonary, hematology/oncology, or through nursing or social work; and 5 . State and federal agencies (through either budgeted staff positions or grant-funded positions) such as Maternal and Child Health Services (for example Project Uptown, 1992), Children’s Medical Services, funds from PL 99457, and developmental evaluation centers (university-affiliated programs funded by the Maternal and Child Health Bureau, Public Health Service, Washington, DC). Although obtaining appropriate funding for the position is important, of equal concern is the establishment of an appropriate pay scale in systems that are generally geared toward professional pay scales. Moreover, it is critical to the role that the parent consultant have an advocate at the administrative level within the health-care institution or state or governmental agency. Oftentimes, it is this advocate at a high administrative level who can voice the need and actual benefits of the parent consultant role. In addition, such an administrative person has knowledge of and access to a variety of funding sources. With the increased competition for limited dollars in the health-care field, the parent consultant and his or her advocate in the administrative position should prepare a well-documented proposal, which includes the need for the position, specific goals, objectives, a realistic budget, and a evaluation tool, to present to potential funding sources. The key to obtaining funding for such a position is creativity and perseverance.

CONCLUSION The parent consultant role is an innovative mechanism for the delivery of family-centered care. The consultant’s key strengths are being a parent who has cared for a child with special health-care needs and who can transfer this knowledge to parents and professionals astutely and sensitively. Certainly, such a role has important implications for the future world of health care, where cost containment and increased technology and complexities will warrant the presence of parent consultants to reach the goal of family-centered health care for children with special needs.

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Continuity of care in children with special healthcare needs: a qualitative study of family's perspectives.

professional partnerships in caring for children with special health care needs.

caregiver health literacy among children with special health care needs: a systematic review of the literature.

Effectiveness and Safety of Acute Care Telemedicine for Children with Regular and Special Healthcare Needs.

Modeling the determinants of Medicaid home care payments for children with special health care needs: A structural equation model approach.

Bone health in children with special health care needs.

Children with special health care needs: the canary in the health care reform coal mine.

Transition care for children with special health care needs.

Unmet needs for dental care in children with special health care needs.

Addressing the oral healthcare needs of special needs children: pediatric nurses' self-perceived effectiveness.

Children with special needs: the Warnock Report.

Trajectories and outcomes among children with special health care needs.

Health literacy and the Affordable Care Act: a policy analysis for children with special health care needs in the USA.

Care coordination, family-centered care, and functional ability in children with special health care needs in the United States.

Measuring parents' perspective on continuity of care in children with special health care needs.

The emotional and behavioural functioning of siblings of children with special health care needs across childhood.

Learning trajectories of children with special health care needs across the severity spectrum.

Care coordination and unmet specialty care among children with special health care needs.

Consultants now a special case.

Children with special health care needs: with population-based data, better individual care plans.

Preventive dental health care experiences of preschool-age children with special health care needs.

Understanding utilization of outpatient clinics for children with special health care needs in southern Israel.

Transitioning from Pediatric to Adult Dental Care for Adolescents with Special Health Care Needs: Adolescent and Parent Perspectives--Part One.

School Health Services for Children With Special Health Care Needs in California.